Treatment for hyperthyroid

[Daisybell]

My latest round of blood tests has showed that i am now ‘sub-clinically hyperthyroid’ - which is to say that my TSH is <0.01, my T4 is 16 and my T3 is also at the very top of the normal range.

I have had this before - i was diagnosed with Graves Disease about 10 years ago...
So this is the third time I have had issues with my thyroid levels, but they have been stable for at least 6 years prior to now. Previous treatment has been with carbimazole. It was horrible. It now states in my medical records that I am ‘intolerant’ of carbimazole. Even tiny doses make me feel poisoned.

So - sorry for the long-winded way of getting to the point - has anyone else here had alternative treatment for Graves Disease/hyperthyroidism? If so, how was the treatment for you?

I am reluctant to go down the surgery or radioactive iodine route unless i really have no other options as I dont want to end up on replacement thyroid hormones if its at all possible to avoid it...

Thanks for reading!

 

[Invisible Woman]

My sister was diagnosed with Graves disease several decades ago and was treated with carbimazole. I don't think she was terribly happy on it.

She went on to develop an autoimmune disease and one of the medications for that suppresses thyroid output so her carbimazole was no longer needed. Unfortunately, I can't remember the drug, but suspect it wouldn't be something that would be used for thyroid alone.

 

[Invisible Woman]

Thyroid UK have this page -

https://thyroiduk.org/hyperthyroid-basics/graves-disease/

One suggested treatment is beta blockers while another approach mentioned is use of "block and replacement" drugs. It doesn't state what the blocking drug might be.

It does mention a drug called propylthiouracil as an alternative to carbimazole (methimazole).

https://bnf.nice.org.uk/drug/propylthiouracil.html

 

[Daisybell]

Thanks IW for the research!
I’m just cursing my thyroid at the moment. None of the options look great. I had hoped that having had a number of years without problem that I might have got away with no treatment. I had also managed to convince myself that the LDN was for some miraculous reason keeping my thyroid function stable.
PTU looks to be as horrible a drug as carbimazole - but I expect I may have to try it. The thought of ending up on replacement thyroid hormones on top of the ME and my other auto-immune condition is just too much. Curses to it all.

 

[Mithriel]

My latest round of blood tests has showed that i am now ‘sub-clinically hyperthyroid’ - which is to say that my TSH is <0.01, my T4 is 16 and my T3 is also at the very top of the normal range.

I have had this before - i was diagnosed with Graves Disease about 10 years ago...
So this is the third time I have had issues with my thyroid levels, but they have been stable for at least 6 years prior to now. Previous treatment has been with carbimazole. It was horrible. It now states in my medical records that I am ‘intolerant’ of carbimazole. Even tiny doses make me feel poisoned.

So - sorry for the long-winded way of getting to the point - has anyone else here had alternative treatment for Graves Disease/hyperthyroidism? If so, how was the treatment for you?

I am reluctant to go down the surgery or radioactive iodine route unless i really have no other options as I dont want to end up on replacement thyroid hormones if its at all possible to avoid it...

Thanks for reading!

My husband took a thyroid storm, his hormones levels were so high he had metabolised all his muscle and was turning yellow from liver breakdown. He was put on betablockers until he could get radioactive therapy. Now he takes thyroxine tablets and his levels are checked each year.

His father, an aunt and female cousin have all had radioactive therapy and did very well after it. The only side effect, if such it can be called, is he gets a bit weepy watching soppy films

edit, carbimazole seems an awfully powerful drug to use. The effect of too much thyroid hormone is mainly too much adrenalin, hence the betablockers, and my husband was warned he may feel anxious because of that as his brain would try to find a reason from outside to explain how it felt. It looks as if this drug is just to lower that anxiety.

 

[Arnie Pye]

has anyone else here had alternative treatment for Graves Disease/hyperthyroidism?

I've never been hyperthyroid. If you don't tolerate carbimazole then the main alternative in the UK is propylthiouracil (PTU).

In the USA the first-choice anti-thyroid (AT) drug is methimazole for humans and carbimazole for hyperthyroid animals, for some unknown reason. I don't know what treatment regimes are used in New Zealand, but in the UK patients are usually given an anti-thyroid (AT) drug - either carbimazole or PTU - and in addition are given beta blockers to help slow down a speeding heart, reduce blood pressure, and reduce anxiety.

Block and Replace (B & R) is apparently easier for some hyperthyroid sufferers to cope with because it involves less fluctuation of thyroid hormones. Thyroid hormone output is suppressed with an AT drug, then Levothyroxine is given to make up for the reduced or stopped output of thyroid hormones.

A very good website on the subject of everything to do with hyperthyroidism is this one :

https://elaine-moore.com/

The website owner's (short) story of her experience of thyroid disease and treatment is worth reading as a cautionary tale:

https://elaine-moore.com/About/AboutElaineMoore/tabid/58/Default.aspx

 

[Daisybell]

Well - my GP won’t refer me to a specialist at the moment because I’m not technically hyperthyroid (yet). She thinks I’m over -anxious about it. She has given me a blood test form to do in 6 weeks. I had to push her to not make it for 3 months time.
Can anyone here point me to any data about how quickly thyroid levels can change?

 

[Invisible Woman]

Can anyone here point me to any data about how quickly thyroid levels can change?

Now that, my friend, is a whole new can of worms.

According to the powers that be in the UK, unless symptomatic a yearly thyroid function test should be sufficient.

However, according to my endo (sadly now retired, demand for thyroid hormone and thyroid output do fluctuate. Not as dramatically in terms of amount and frequency as insulin, for example, but slightly on an ongiing basis. He also wasn't at all surprised when we discovered I sometimes needed to tweak my dose down in summer & up in winter.

Various factors can affect it such as weight, sex hormone fluctuations and so on.

In the UK they recommend retesting thyroid function at approx 12 weeks after a dose adjustment. As far as I know (& I'm more used to dealing with hypothyroid here) the reason behind this this is it takes a long time for levels to adjust throughout the body tissues. Plus dose adjustments are generally quite small because dosing (T4) too quickly can trigger long symptoms before the hormone levels are adjusted in the tissues.

As far as I know initial monitoring intervals when assessing a developing / borderline thyroid condition would be about 12 weeks.

Thyroid UK & the British Thyroid Foundation will probably have more information.

 

[Arnie Pye]

Can anyone here point me to any data about how quickly thyroid levels can change?

Thyroid hormones and TSH can and do change every minute of every day. TSH and T3 have a circadian rhythm. Take a look at the graphs on page 2 in this paper :

Title : Free Triiodothyronine Has a Distinct Circadian Rhythm That Is Delayed but Parallels Thyrotropin Levels

Link : http://www.reboundhealth.com/cms/im...yronine has a distinct circadian id 18123.pdf

Note: Thyrotropin is another name for TSH.

If you want to be diagnosed as hyperthyroid to encourage the doctor to treat you then you need to get your blood tests done when your TSH will be at its lowest which looks like it would be from about 1pm - 2pm in the afternoon.

But you can have temporary hyperthyroid episodes if you have Hashimoto's Thyroiditis. In that situation the low TSH isn't caused by overactivity of the thyroid, it is caused by immune system attacks on the thyroid which destroys cells. Those cells then leak thyroid hormones into the bloodstream, thus lowering the TSH. Anti-thyroid drugs won't prevent that from happening, and with each attack on the thyroid you lose more and more of it and you will actually become permanently hypOthyroid.

In order to differentiate between Hashi's and Graves' you would need a full set of thyroid antibodies to be tested. See this page for further info :

https://www.labtestsonline.org.au/learning/test-index/thyroid-antibodies

 

[Invisible Woman]

In order to differentiate between Hashi's and Graves' you would need a full set of thyroid antibodies to be tested.

Absolutely. In the lead up to my diagnosis my thyroid function was cycling through producing too much hormone & too little.

When I finally had tests done the doc was convinced I was hyper rather than hypo because I was a bit underweight and had some hypo symptoms. The results showed my TSH was through the roof and I was hypo. It was such a surprise my doc tested to make sure it wasn't a problem with the pituitary rather than autothryoiditis.

 

[Daisybell]

Thanks @Invisible Woman and @Arnie Pye
I was given a Graves diagnosis in 2012 when i first had problems. my T4 at that point was 36... and so they did the full set of antibody testing.

I would love to not need treatment - I’m not averse to being a bit hyperthyroid - but what i really don’t want is for my thyroid levels to get so abnormal that the doctors want to fill me full of lots of pills all at once. Been there, done that, didn’t like the result at all. I felt horrible, and completely out of control as my levels went crashing down. you know - it takes such a long time for us to get over things that upset the fine balance we try to negotiate - and my lifestyle currently is only possible if I don’t get any worse..
But when i tried saying that to the doctor she just thought i was over-anxious.

 

[Invisible Woman]

But when i tried saying that to the doctor she just thought i was over-anxious.

...and of course some symptoms of hyper can be similar to anxiety so she may well be assuming that some of your reluctance is down to feeling of anxiety magnifying concerns over treatment.

I can understand some of her concerns if you are over - thyroidtoxicosis can lead to loss of bone density and so on but there does need to be a balance on how you feel. When my thyroid is out it messes up everything else & too much T4 is as incapacitating for me as too little.

I wonder if during the next conversation with her, asking her to explain why she feels treatment at this stage is important, as you feel ok as you are, would make her more amenable to listening to you in return? Or is she more of a "because I say so merchant?"

I'm wondering if it would open up some room for negotiation. If you agree to get tested every so often and then if there's a pattern of deterioration have a rethink. Maybe at some point in the future agree to a bone density scan to allay her concerns (if that is one of her concerns).

The fact your results are subclinical and you have a history of becoming hyoerthyroid /borderline and then it settling down again might reinforce your argument for a wait and see approach. Do you have copies of those test results? If so, I find bringing copies of the relevant results with me to hand over, rather than them hunting through my records & getting distracted tends to work better.

 

[Arnie Pye]

I would love to not need treatment - I’m not averse to being a bit hyperthyroid

In that case you would need to get tested at the time of day that your TSH is at its highest - which would be around 7am - 9am. Since doctors usually insist on using a single, fluctuating, not very reliable measure of thyroid activity such as TSH to decide everything thyroid you have to use it to your advantage if you can. However, if your doctor routinely tests Free T4 and Free T3 as well as TSH, then this could backfire on you since T3 is high when TSH is high. But if she just tests TSH it could be helpful. Look at the graphs in the link I gave earlier, to see if you can make them work to your advantage in any way, during office hours. But it depends on what your doctor tests and acts on.

On the thyroid forum I read some people have found that they can reduce the severity of their thyroid problems and reduce different kinds of thyroid antibodies by going gluten-free, whether they have Hashi's or Graves' or don't appear to have either. If that makes no difference, then some go lactose-free as an experiment. I don't know if there is any research behind this, but quite a few people swear by it. Personally I found that removing gluten from my diet helped me to feel a lot better and I don't have confirmed Hashi's or Graves', and nor do I have coeliac disease.

 

[Saz94]

dosing (T4) too quickly can trigger long symptoms before the hormone levels are adjusted in the tissues.

What does that mean?

 

[Invisible Woman]

What does that mean?

When initially diagnosed with hypothyroidism, or if a test shows that you need to increase your dose you have to allow time for the dose to come up. It can take weeks or more for the optimum dose to take effect. This is why they tend to retest up to 12 (no less than 8) weeks later

Trying to shortcut this or speed it up, by taking say an extra 50mcg per day instead on an additional 25mcg, may well trigger symptoms of hyperthyroidism or excess T4 replacement before the levels throughout the body tissue have increased to the optimum, or desired dose.

 

[Arnie Pye]

When initially diagnosed with hypothyroidism, or if a test shows that you need to increase your dose you have to allow time for the dose to come up. It can take weeks or more for the optimum dose to take effect. This is why they tend to retest up to 12 (no less than 8) weeks later

Trying to shortcut this or speed it up, by taking say an extra 50mcg per day instead on an additional 25mcg, may well trigger symptoms of hyperthyroidism or excess T4 replacement before the levels throughout the body tissue have increased to the optimum, or desired dose.

The absurd thing about Levo is that according to the BNF (British National Formulary) doctors should retest every three - four weeks after increasing dose. Some doctors do this, but from reading on thyroid forums it is quite rare.

What actually happens in many cases is that doctors start at very low doses and make patients wait for months without a raise in dose. I remember reading about one woman who was severely hypothyroid who had taken a year to get up to something like 75 mcg per day alternated with 50mcg Levo per day.

What patients actually need is some happy medium between these two situations.

Doctors seem to believe that Levothyroxine is about as dangerous as swallowing an explosive. And yet they have no concept at all of what the dangers are of people having too little thyroid hormone. If women get depressed, anxious and fat then that is normal for women isn't it? And there are always statins, beta blockers, anti-depressants, anti-psychotics, anti-anxiety drugs, blood pressure drugs, and fat blockers for all the symptoms of under-treated hypothyroidism. Or just blame the woman for not eating less and moving more.

I learned a while ago that when new formulations of Levothyroxine are tested the pharma companies often use healthy men as the subjects and give them 600mcg of Levo per day. Women who are actually hypothyroid struggle to get 100mcg Levo per day because doctors think the stuff is addictive and women just want to get some "speed" to help with their housework.

Endocrinology as a medical discipline is an absolute disgrace populated by what appears to be mostly sadistic men who think lots of women are lying and attention-seeking drug addicts.

Hypothyroidism


By mouth

• For Adult 18–49 years
  Initially 50–100 micrograms once daily; adjusted in steps of 25–50 micrograms every 3–4 weeks, adjusted according to response; maintenance 100–200 micrograms once daily, dose to be taken preferably at least 30 minutes before breakfast, caffeine-containing liquids (e.g. coffee, tea), or other medication.
  
  
• For Adult 50 years and over
  Initially 25 micrograms once daily; adjusted in steps of 25 micrograms every 4 weeks, adjusted according to response; maintenance 50–200 micrograms once daily, dose to be taken preferably at least 30 minutes before breakfast, caffeine-containing liquids (e.g. coffee, tea), or other medication.
  

Hypothyroidism in patients with cardiac disease,
Severe hypothyroidism
By mouth

• For Adult
  Initially 25 micrograms once daily; adjusted in steps of 25 micrograms every 4 weeks, adjusted according to response; maintenance 50–200 micrograms once daily, dose to be taken preferably at least 30 minutes before breakfast, caffeine-containing liquids (e.g. coffee, tea), or other medication.
  

Source : https://bnf.nice.org.uk/drug/levothyroxine-sodium.html

I have a feeling that viewing the BNF is restricted to IP addresses in the UK, but I could be wrong.

 

[Invisible Woman]

The absurd thing about Levo is that according to the BNF (British National Formulary) doctors should retest every three - four weeks after increasing dose. Some doctors do this, but from reading on thyroid forums it is quite rare.

I have always been told that is too soon. In my own experience, it probably is. Unless my symptoms are not easing after the 8 weeks mark then I find about 12 weeks is right for me (n=1).

What actually happens in many cases is that doctors start at very low doses and make patients wait for months without a raise in dose. I remember reading about one woman who was severely hypothyroid who had taken a year to get up to something like 75 mcg per day alternated with 50mcg Levo per day.

Yes, they do. Again my own n=1. If you increase the dose too fast then you find yourself in a situation where you're cycling up and down and chasing the optimum dose, having to adjust up and down fairly rapidly. This is really not a good place to be. Taking too much thyroxine can make you feel as unwell as too little.

Again, my own experience, it's not just the levels of TSH, T4 & T3 that affect how I feel, the rate of change if those levels can trigger strong symptoms - the faster the rate the stronger the symptoms.

Women who are actually hypothyroid struggle to get 100mcg Levo per day because doctors think the stuff is addictive and women just want to get some "speed" to help with their housework.

This isn't my experience. At one point while already on levothyroxine my demand increased for unknown reasons - I suspect other hormone imbalances were affecting it. I had to adjust the dose up to 175mcg daily. Most of the time my dose is above 100mcg.

Doctors seem to believe that Levothyroxine is about as dangerous as swallowing an explosive. And yet they have no concept at all of what the dangers are of people having too little thyroid hormone.

Yes, but this is coming from the top down. Doctors have to follow the directives passed down by the CCGs, PHE etc unless there's good reason not to. If it looks like they're prescribing anything unusual they have to explain why. They have a lot less leeway than in the past. Plus in the past they would have routinely referred someone to an endocrine clinic if the patient wasn't responding as expected. These days they are discouraged from referring if it can be avoided.

pharma companies often use healthy men as the subjects and give them 600mcg of Levo per day.

. I don't know if this is true but the only hypothyroid males I know are on much lower doses than me. 600mcg per day would make you feel really ill.

Endocrinology as a medical discipline is an absolute disgrace populated by what appears to be mostly sadistic men who think lots of women are lying and attention-seeking drug addicts.

There are always bad 'uns. I have spent most of the last 30 years in the care of endos. At worst they did what was needed, the majority of them were very helpful & supportive. Again from my own personal experience, of all the specialities, this one has demonstrated to me the best understanding of the impact of living with chronic disease.

Sadly, more hospital consultants are having to toe the party line and work within guidelines that don't always work in the best interest of the patient.

 

[Simbindi]

Back in 1993 when first diagnosed with hypothyroidism, I was put on a long term dose of 100mcg a day, which was started at 50mcg, increased by 25mcg with 6 weekly testing by my GP until my TSH, T4 and T3 levels were in the middle of the normal ranges. Once that was shown with the final blood test I would have been given an additional one 6 weeks later to confirm that the dose was optimum.

Many years later I was referred to an endocrinologist because my T4, T3 and TSH results were subnormal even after the GP increased my dose up to 175mcg a day (it was gradually increased over the years). The consultant put me up to 275mcg a day, again with incremental increases and 6 weekly testing of my TSH, T4 and T3 levels. This time she wanted to put me in the top end of the 'normal' ranges, which made an enormous difference to my functioning and fatigue levels.

In more recent years my current GP felt I was exceeding the normal range by too much and has reduced down my dose to 187.5mg a day (175mcg and 200mcg every other day). I felt this was too low and indeed have put on a lot of weight since then despite only eating 2 meals a day. However, I haven't been able to get to the practice for a blood test for almost 3 years so I have no idea what an up to date blood test would reveal. I was planning on asking for a district nurse to come to my home to take my bloods when the Covid-19 pandemic hit. I suspect the menopause was what was affecting my hormone levels when my GP insisted on lowering my thyroxine dose and I may well require more now than I've been taking.

The half life of thyroxine in the human body is 7 days, which means that 98% of a dose would normally have cleared from the blood in 6 weeks, assuming it is clearing at the average rate.

 

[Saz94]

The absurd thing about Levo is that according to the BNF (British National Formulary) doctors should retest every three - four weeks after increasing dose. Some doctors do this, but from reading on thyroid forums it is quite rare.

What actually happens in many cases is that doctors start at very low doses and make patients wait for months without a raise in dose. I remember reading about one woman who was severely hypothyroid who had taken a year to get up to something like 75 mcg per day alternated with 50mcg Levo per day.

What patients actually need is some happy medium between these two situations.

Doctors seem to believe that Levothyroxine is about as dangerous as swallowing an explosive. And yet they have no concept at all of what the dangers are of people having too little thyroid hormone. If women get depressed, anxious and fat then that is normal for women isn't it? And there are always statins, beta blockers, anti-depressants, anti-psychotics, anti-anxiety drugs, blood pressure drugs, and fat blockers for all the symptoms of under-treated hypothyroidism. Or just blame the woman for not eating less and moving more.

I learned a while ago that when new formulations of Levothyroxine are tested the pharma companies often use healthy men as the subjects and give them 600mcg of Levo per day. Women who are actually hypothyroid struggle to get 100mcg Levo per day because doctors think the stuff is addictive and women just want to get some "speed" to help with their housework.

Endocrinology as a medical discipline is an absolute disgrace populated by what appears to be mostly sadistic men who think lots of women are lying and attention-seeking drug addicts.



Source : https://bnf.nice.org.uk/drug/levothyroxine-sodium.html

I have a feeling that viewing the BNF is restricted to IP addresses in the UK, but I could be wrong.

Completely agree. Thankfully ive found a good private endocrinologist. Happy to pass the recommendation on to anyone who wants.

 

[Saz94]

When initially diagnosed with hypothyroidism, or if a test shows that you need to increase your dose you have to allow time for the dose to come up. It can take weeks or more for the optimum dose to take effect. This is why they tend to retest up to 12 (no less than 8) weeks later

Trying to shortcut this or speed it up, by taking say an extra 50mcg per day instead on an additional 25mcg, may well trigger symptoms of hyperthyroidism or excess T4 replacement before the levels throughout the body tissue have increased to the optimum, or desired dose.

Funny thing is, when I started thyroxine, and every time my dose was increased, I got the improvements in my symptoms within a couple of days. And after a few days, I had reached the maximum improvement that I got from it - my symptoms didn't get any better than that after being on the dose for weeks/months.

I guess I am just weird.