ME, Thyroid, Hormones, Migraines - connection?

@Bill Ahhh, Someone important said, Good sleep is the foundation of good health. And how marvellous you're feeling the benefits!

Definitely fair game to comment on something I've put out there - and I really appreciate your input. I have my husband's sleep study, and he somehow slept for 6 hours, getting full sleep cycles!

I don't know how he did it. I only got an hour and a half, and they pronounced me fine on that basis! Well, I'm not bloody fine now.

You've prompted me to discuss the machine again with him, so thank you. He doesn't think it's an issue because HE'S sleeping just fine with an antidepressant called mirtazapine that knocks him out cold.

I don't know how likely it is that I have apnea - I sleep so quietly that when I'm napping in the day, he checks my pulse!

I'm going to push hard to see a sleep doctor myself - I think I have Alpha Wave Intrusions waking me up. I should be in Delta Wave sleep, but BAM! woken up by sudden Alpha waves.

Determined to join you in the Good Sleep Club!

 

@Jonathan Edwards Thank you for commenting.

Oh dear, misinformation and confusion. Will need a pot of tea, a nap and to reread 10 times.

 

I'm looking at this from a slightly different angle as I've gone backwards to look at wider picture and not just post glandular fever onset. My daughter started to noticeably have allergic reactions after chickenpox ( pre school), shingles ( pre age 10) and glandular fever( age 14) specifically to things that were bleached ( benzoates) and then for specific food colourants (salicylates) - also synthetic vit E ( think this is similar chemical structure) She has symptoms of hypothyroid but results within normal ranges.
I'm looking at liver function as being the common denominator-herpes viruses can impact liver function , and liver is involved in sulfation and hormone synthesis; if SULT genes have been epigenetically tweaked/ or are duff anyway might this impact into methylation, PAPS functionality ?... recent diagnosis of H Pylori can also be linked to compromised liver function. Liver seems also affected with stress ( - we had bullying episodes at both primary and secondary - the psychological type that girls excell at)....
I await GP returning from holiday to try and present this and try and get further.

 

Check his AHI index. Most people who snore like this--in my experience--are going to have many apneas. So I'm feeling skeptical that the doctor gave good advice here (pending evidence to the contrary).

Sleeping with a mask on is something that takes an adjustment; however, the benefits of good sleep are positively motivating. I now look forward to it. And I was mortified at the thought originally.

Bill

 

Hello @Squeezy
I'm another one with the co-existence of autoimmune hypothyroidism plus migraines. I was diagnosed with the former many years before the ME diagnosis, and although I did have migraine occasionally before either of those diagnoses, they were few and far between. In fact I have only ever had migraine aura, which does impact on me with fatigue, and weakness for maybe 24 hours afterwards, but not usually the headache or nausea.

Many women seem to have migraine associated with hormonal changes in their menstrual cycle, but mine got much worse after the menopause, and despite trying all the possible routes to improve them nothing seemed to work, until earlier this year.... I was by then 15 years post menopause, and having the migraine aura sometimes fortnightly, sometimes more.

It was suggested to me that I should try natural progesterone for my chronically low cortisol - DHEA was normal but the 3 salivary cortisol tests showed low despite trying over 4 years to improve the scores. As a result my migraines improved unexpectedly! The incidence was down to about monthly, sometimes fewer than that, usually associated with my chronic stomach pain flaring, (vagus nerve?) or with my chronic dysfunctional immune system (low IgA and low IgG) flaring.

Unfortunately though this has all gone haywire again as my Endocrinologist is insisting that I should reduce my T3 usage (was T3 only for 5 years) since my osteoporosis diagnosis as she is convinced it's partly due to my suppressed TSH. I was slowly moved from 55mcg T3 to a mix of T4 and T3, and this month got to 75 T4 and 20 T3. With that my migraines began again in earnest - 4 in a week and 6 in 3 weeks since I began the new regime. Seems likely to me to show a link between the 2 actions, so for now I have moved back to 50 T4 and 25 T3 but the constant fight against fresh colds is flooring me - they too have increased since the reduction of T4, but no one in the Endo dept (I see a thyroid nurse) seems to see any connections - just me!

 

Merged thread
I am a newbie but I wrote a post about my ME/CFS and someone said for me to try find my TSH levels and I found one from December 2017 it was 1.3 and December 2018 it was 1.2 so gone down although the doc as always said everything fine. Just wondering if anyone else has same?

 

@Jan87

Do you know the reference range for TSH? I'm not sure if there is an internationally accepted reference range for TSH; there may be. The reference range for this may be the same whatever country one is in, but then again, it might not be.

I understand that generally, if one's TSH falls within this reference range, then doctors usually view this as fine.

Alternative physicians may have a different view about this. They may believe that a result at the very top end of the reference range, meaning your pituitary is really insisting your thyroid gland get going, requires thyroid medication.

It might be an idea to look up the reference range for TSH.

I find it a bit frustrating when physicians just tell me a number result, and don't provide the info about the reference range for that particular test.

Patients can often get copies of their test results. Some countries may have regulations, court decisions etc., that say patients have a right to their test results.

Yonks ago, my request for copies of basic test results was refused. Following a court case in my country in about 1990, patients can have access to their results. Some jurisdictions now enable patients to sign up to directly receive digital copies of these results. Hope this helps.

 

Here in BC we can get our lab results online for any blood work done.

 

Reference range is 0.4-4 so it's within normal limits and at the low end. Like @DokaGirl said, TSH is more of a worry if it's high because it's not being responded to. Hope this helps.

 

My TSH was down to .81 and no one was worried about it. One doctor pointed out to me that TSH levels fluctuate.

 

My wife's ME started after a thyroid operation. Fairly recently we felt her ME might be complicated by her thyroid not being adequately managed, even though everything was supposedly in normal range. Having upped her T4 medication she has definitely improved somewhat, though the ME is still a major issue.

See https://www.s4me.info/threads/the-c...nt-2010-kansagra-et-al.4098/page-2#post-98562

 

Thyroid stuff is really interesting. However, I haven't kept up with it. If you search on-line then you'll probably find stuff linking thyroid function to ME/CFS e.g. see below*.

Ron Davis's son is pretty much low in everything.

Ron Tompkins (OMF - Harvard) in a recent interview highlighted that sepsis results in metabolic and immunological changes. So possibly chronic sepsis might affect thyroid function. I.e. changes in thyroid function in ME/CFS may be a consequence of ME/CFS [chronic sepsis] not the cause.



*“Low T3 Syndrome” in Patients With Chronic Fatigue ... - NCBI - NIH
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5869352/
by B Ruiz-Núñez - ‎2018 - ‎Related articles
20 Mar 2018 - Keywords: chronic fatigue syndrome, thyroid, “low T3 syndrome”, ... Disturbed hypothalamus–pituitary–adrenal (HPA) axis, presented as mild ... interactions between both the HPA and hypothalamus–pituitary–thyroid (HPT) axes and ...... fatigue syndrome (ME/CFS): increased interleukin-1, tumor necrosis .

 

TSH is a bit of a blunt tool - from the Lapp paper posted earlier:-

Thyroid function tests.
TSH is least important due to HPA Axis suppression in ME/CFS.
Free T4 and/or total T3

there has been research re issues with glucocortinoids, and a higher prevalence of low T3 has been found in ME
https://www.frontiersin.org/articles/10.3389/fendo.2018.00097/full
https://www.meassociation.org.uk/20...levels-of-key-thyroid-hormones-20-march-2018/

Given that a hibernation state has been postulated this does make sense.

My aunt uses daily temperature readings as a gauge for thyroid function ( she had a partial thryroidectomy in her early 30s) - I set up a spreadsheet for her that automatically graphs the input. The initial graphs were all over the place, it's a lot less variable now.

I have heard that TSH falls in winter ( cue for semi hibernation), so it may depend when you are tested.

 

@Amw66

Thank you for the note on Free T4 and total T3.

I don't feel TSH is the only thyroid test to be done, and agree Free T4 and T3 are a good idea to have tested as well.

There are panels of thyroid tests that can be done.

And, the basal body temperature provides, as I've been told, some indication of how your thyroid is functioning.

Apparently the autoimmune disease Hashimoto's causes much of the hypothyroid disease:

https://www.thyroid.org/hashimotos-thyroiditis/

 

As has already been stated, TSH means very little. Read up on T3 and reverse T3. Find someone who will test them.

Here are some sites I looked at in 2012. I do not know how many of them are still available.
Thyroid RT3
Stop the Thyroid Madness
Tired Thyroid
National Academy of Hypothyroidism
Paul Robinson
Endocrine Awareness Center for Health
Thyroid Science
Dr Rind