Hello 👋
At last GP appt I was told that my symptoms couldn't be thyroid related and have been referred to CFS clinic. I'm not yet out of range TSH wise. I haven't tested privately recently as I've just increased all recommended vitamins so will give those chance to work before a new test.
Just wondering if they consider thyroid at CFS clinics? Anyone else found help this way? I do not think that I have CFS but just going with what's offered atm.
Thanks 😊
TSH is not a reliable marker, particularly after medication is initiated.
Full test....
TSH, FT4, FT3, vit D, vit B12, folate, ferritin and thyroid antibodies
CFS can be the result of low T3
The folowing might be of interest...
frontiersin.org/articles/10...
Higher Prevalence of “Low T3 Syndrome” in Patients With Chronic Fatigue Syndrome: A Case–Control Study
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paulrobinsonthyroid.com/dr-...
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How much levothyroxine are you taking
Which brand
Previous post with thyroid results…tested at 1.30pm
TSH - 2.550
FT4 - 14.20
FT3 - 4.06
Shows you are under medicated and need 25mcg dose increase in Levo
Request/insist in increase via GP
Alternatively see thyroid specialist
Meanwhile vitamin levels need improvement
Retest vitamin D too
NHS easy postal kit vitamin D test £31 via
Low B12 symptoms
b12deficiency.info/signs-an...
methyl-life.com/blogs/defic...
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement and a week later add a separate vitamin B Complex
Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.
If Vegetarian or vegan likely to need ongoing separate B12 few times a week
Highly effective B12 drops
natureprovides.com/products...
Or
B12 sublingual lozenges
uk.iherb.com/pr/jarrow-form...
cytoplan.co.uk/shop-by-prod...
B12 range in U.K. is too wide
Interesting that in this research B12 below 400 is considered inadequate
healthunlocked.com/thyroidu...
Low folate
supplementing a good quality daily vitamin B complex, one with folate in (not folic acid)
This can help keep all B vitamins in balance and will help improve B12 levels too
Difference between folate and folic acid
healthline.com/nutrition/fo...
Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid.
thyroidpharmacist.com/artic...
B vitamins best taken after breakfast
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule)
Thorne currently difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay
Igennus B complex popular option too. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose
Post discussing different B complex
healthunlocked.com/thyroidu...
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
endo.confex.com/endo/2016en...
endocrinenews.endocrine.org...
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12 until over 500
Post discussing how biotin can affect test results
From previous post
I take D3 and K2, Iron, Magnesium, B12, B6 supplements
Are you taking iron at least 4 hours away from levothyroxine and 2 hours away from any other supplements
Is this prescribed or self supplement
You need full iron panel test 3-4 times a year if taking iron
Stop iron supplements 5-7 days before testing
Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test
Medichecks iron panel test
medichecks.com/products/iro...
Magnesium best afternoon or bedtime, at least 4 hours away from levothyroxine
B complex instead of B6
Firstly I wouldn't rely on a CFS clinic to think about thyroid. In my experience they really don't think outside the box other than trying to label depression.
Looking at your previous post you had bottom of the range B12. Whats happened about that?
Are you vegan or vegetarian?
What were your vitamin results?
If you are taking iron then be sure to take it on its own 4 hours away from anything else as it will prevent the absorption of other vitamins.
What brand and dose supplements are you taking?
Over the years, we have seen rather too much disagreement, bordering on antagonism, between people in the CFS/ME and thyroid camps.
As I see things, the symptoms have too much overlap to be able to ignore either.
In time, I suspect we will see more understanding of the effects of CFS/ME on thyroid and vice versa. Hopefully resulting in better diagnosis and treatment.
But, for now, some in the CFS/ME camp can be dismissive of thyroid. And some in the thyroid camp can insist CFS/ME is just a particular presentation of thyroid issues.
It is easy to put on blinkers and much more difficult to take them off.
It is surely impossible to see any reason someone with CFS/ME couldn't have a thyroid issue entirely separately? Or vice versa. Yet there is a widespread insistence that people have one OR the other.
I've seen the same with Fibro, I know the theory that Fibro can be down to low T3 and undoubtedly there are those who've found their Fibro symptoms have improved or gone away completely once they are on optimal thyroid replacement. Because hypothyroid does have similar symptoms to Fibro.
But there are those, like me, who haven't. It is possible to have Fibro or CFS AND a thyroid disorder. It doesn't have to be either or.
The problem is medicine hasnt really got to the bottom of what causes these mysterious conditions and filling the knowledge gap are theories and wild speculation, not facts.
My personal take is that it is difficult to believe that thyroid hormones are not a part of the issue in fibromyalgia and CFS/ME.
But throwing thyroid hormone(s) at them might not be the answer.
I think that certainly with Fibro doctors aren't entirely sure whether its autoimmune, like Lupus or RA, even though Fibro doesnt cause damage to bones, muscles or tendons ( although it can sure feel like it) or if its more a neurological or central nervous system dysfunction, like MS. Where the central nervous system is hyperexcitable, similar to Epilepsy, and sends inappropriate pain messages to the brain. Sensations that non Fibro people brains ignore. This hyperexcitability might also explain the poor sleep most Fibro sufferers get.
The CNS never relaxes or has down time. Its known as Central Nervous System Sensitisation and is common in other chronic pain conditions like chronic migraine, complex regional pain disorder and IBS. The magic bullet would be a way to turn down the dial on the CNS to a normal level.
I've read and listened to podcasts about testosterone helping reduce symptoms for some ladies with fibro as part of there hrt regime. I don't have fibro but It did get rid of all my aches and pains and not had any back issues since being on it.
Possibly worth looking into
Thank you. I have Testosterone implants, they used to make me feel alive again. Recently they have made no difference at all to my energy levels or joint pain which makes me think there is something else going on. I definitely think Testosterone is great and could help so many that are struggling. I am going to try the gel again when my Testosterone levels go down x
As someone who was diagnosed with both FM and CFS/ME - after being diagnosed as hypothyroid, all around 25 years ago - I'm convinced that for a cohort of those with the syndromes they are suffering from low T3. But perhaps not all! I suspect this relates more to CFS/ ME than FM.
FM was traditionally referred to as Fibrositis. My maternal grandmother was bed bound for several years, in great pain, despite experiments with gold injections and more
I also suspect there is a genetic link....look to parents, grandparents, even further back!
bonsecours.com/health-care-...
Bear in mind that T3 is one of the most important hormones in the body and for good health almost every cell needs to be flooded by way of an adequate and constant supply of T3
Low cellular T3 = poor health. My mantra!!!
Long term low cellular T3 can cause irreparable damage (diogenes once explained this to me) and it seems this explains my remaining symptoms.....mainly fatigue. OK I'm 78 but that's not a reason to be fatigued!!
Catch it early if you can!!
Based on medical evidence it also appears that I've had this problem for most of/all my life....it just got worse with the passage of time.
As for disagreement I was very rudely dumped by a fibro forum for daring to suggest a thyroid link - in truth it was antagonistic on their part!
RedOne1 you say,
I haven't been diagnosed hypo so I don't take any thyroid hormones. I realise my levels are not the most concerning at the moment but I just have so many thyroid symptoms it makes me question it. I guess I'll just have to keep testing to see how it goes.
You may find your thyroid levels are exactly where the clues lie....and your body is telling you to check out those thyroid symptoms you mention.
Listen to your body!
Have a full thyroid test and post the results...including reference ranges
Apologies helvella ...I rant yet again just in case anything resonates with anyone searching for answers.
I'm sorry people on the Fibro forum were rude to you Dippy, I think it behoves us to have open minds and be receptive to opinions and experiences outside our own. Its a poorly understood and even more poorly treated disorder.
FM is a wretched condition and I'm always interested in people's theories ( as long as its science based and they aren't trying to sell me something) 😁. I didnt even know about Testosterone being helpful for some sufferers, so that's one to look into further.
I've also found links that suggest low serotonin levels or even serotonin resistance might be another cause. However its hard to know what came first. All food for thought.
It was a long time ago!
We cannot progress without open minds
I mentioned it to highlight the strength of some opinions on the subject.
There are more questions than answers
And "throwing thyroid hormones" at me was not the answer either, even when I was finally put on T3 monotherapy. When I was diagnosed with ME almost 40 years ago, it was also known as Post-Viral Fatigue Syndrome, after the work of Dr Melvin Ramsay. It came after two bouts of serious flu, one of which put me in hospital, and adult chicken pox - a much more serious infection when one is older.
I believe I was more susceptible to infections and their chronic aftermath through already having Hashimoto's, juvenile pernicious anaemia, and mast cell activation syndrome, all of which were undiagnosed until years later, after I'd got through the acute phase of these viral infections.
Other people's medical histories may tangle ME and hypothyroidism in different ways, but these conditions are certainly not the same phenomena.
Thank you for all your replies.
Re vitamins. I have added the high strength B12 and B Complex as recommended. I have noticed a slight improvement with energy levels so hopefully this will keep getting better. I dont want to stop taking anything yet to allow a new test so I will keep going for another 4/6 weeks then do a full test.
I have suffered with hormonal depression quite severely but this is managed now with Progesterone. I don't feel depressed at the moment just fed up with feeling rubbish. I hope they don't try and blame these symptoms on depression at the clinic. I know the difference between when you cant get out of bed with depression compared to when you have fatigue.
I've just added vitD spray along with my usual VitD and K2 supplement, will monitor how that goes.
I take iron about an hour before bed and I feel that this has helped me a lot with restless legs. My sleep has improved massively but I still always wake up exhausted.
I haven't been diagnosed hypo so I don't take any thyroid hormones. I realise my levels are not the most concerning at the moment but I just have so many thyroid symptoms it makes me question it. I guess I'll just have to keep testing to see how it goes.
I cant see why a person couldn't have both CFS and thyroid problems. I wasn't aware of the issues between the groups but I'm open to researching anything and trying everything I can to hopefully get better 😊
Just be sure that when you do retest thyroid its always at or earlier than 9am as far as possible. Do the test fasting that day (water only) and have breakfast and tea/coffee after the test.
That will give you your highest TSH which can vary quite a bit from test to test pre diagnosis.
I haven't been diagnosed hypo so I don't take any thyroid hormones. I realise my levels are not the most concerning at the moment but I just have so many thyroid symptoms it makes me question it. I guess I'll just have to keep testing to see how it goes.
Sorry ….assumed you were on Levo
Years ago it was actually the cf consultant who said my problems were in fact thyroid and not cfs when gp was having none of it. It always stuck in my mind what he said, that once you started on thyroid meds you're constantly battling with gp over needing an increase in medsHe referred me to an Endo he worked alongside but the wait time was 4 months ( nothing in today terms) I was so ill I couldn't wait and went private shortly after and was diagnosed and started on thyroxine.
Think I just hit lucky with this cfs team, they were all so caring and understanding..was over 10 years ago
At last GP appt I was told that my symptoms couldn't be thyroid related
That is one of the most stupid things that doctors say - and they say it quite frequently - because thyroid hormone is needed by every single one of the millions of cells in your body to function correctly. If there isn't enough to go round, that causes symptoms, and they can happen anywhere and everywhere in your body.
And, with a TSH of over 2, your pituitary is saying that there isn't even enough to satisfy the pituitary. And the pituitary always gets served first when there's any thyroid hormone available. So, the rest of your body must be even more deprived, enough to cause symptoms.
So, yes, your symptoms can, and probably are, thyroid related and your doctor just doesn't understand how it all works.
Hypothyroidism & CFS/Fibromyalgia
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