Hello, my GP has suggested I may have fibro. From what I have read though the symptoms don't quite fit. I only have problems on the right side of my body. This includes tinnitus, headaches (just on the right), muscle spasms in my back and right hip. As well as this, I have general muscle tightness and carpel tunnel, brain fog and fatigue on and off. My TSH is around 1 at the moment. I thought fibro had to be evident in all four quadrants of the body?
Anyone with fibromyalgia and Hashimotos? - Thyroid UK
Anyone with fibromyalgia and Hashimotos?
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Auntbessy
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SlowDragonAdministrator
Fibromyalgia frequently inadequate dose levothyroxine or poor conversion
Tinnitus and Carpal tunnel suggests the same same
When were full thyroid and vitamin levels last tested
Previous results a year ago ….Ft3 pretty low
healthunlocked.com/thyroidu...
Email Thyroid U.K. for list of recommended thyroid specialist endocrinologist and doctors who will prescribe T3
tukadmin@thyroiduk.org
Yes I have thought a lot about conversion problems. My GP is not willing to explore this, nor was the endo I was referred to at Cheltenham hospital. I think I will see if I can find an endo from the list. I've just put it off as I can't afford help privately.
Plus I thought the NHS doesn't prescribe t3 anymore. What should my t3 be? I'm seeing my gp again Tuesday to discuss. If you have any useful links to send, please do. Thanks Rhiannon
58,000 prescriptions for T3 in England in last year
Typically that’s 6 prescriptions per person per year
openprescribing.net/analyse...
GP can’t initiate prescribing T3
First step is to get new blood tests
Always test thyroid early morning, ideally before 9am and last dose levothyroxine 24 hours before test
Do you always get same brand levothyroxine at each prescription
What vitamin supplements are you currently taking
As you benefit strictly gluten free diet, this suggests your gut function is affected and likely conversion is poor
My GP tested lots recently. Not t3 or antibodies tho. I will get a thyroid test sorted asap through medichecks. Yes I use same brand of levo. I keep having to up my dose though every few years. I'm on 175 mg per day now and my recent TSH is 1.9 if I remember correctly. Its usually around 0.
I often wonder if leaving levo off for 24 hours is sufficient as it has a half life of up to 7 days.
I often wonder if leaving levo off for 24 hours is sufficient as it has a half life of up to 7 days.
24 hrs is a sufficient gap to avoid the 'peak' in fT4 level that shows up in blood about 2 -6 (ish) hours after taking the last dose .... if you left longer than 24 hrs then the level of fT4 would be lower than your usual average on that dose of Levo .
Obviously the very long half life of Levo/T4 means that if you wanted to test your thyroid function without any added T4 at all, then yes, you would have to stop taking levo for several weeks to allow it to all go away (and the TSH to respond to your natural T4 levels )...... but usually we want to see the level of fT4 for the dose we are taking, not to find out how much T4 our thyroid is capable of producing with no Levo.
I have only recently this week started on a small dose of levo after suffering for so long ith Hashimotos and being hypo but GP had to get permission from endocrine dept in case i went hyper. When she phoned me to say they had agreed and that i was to make a blood test appointment after the 23rd May, i replied oh so i leave the thyroxine off that morning. Her reply, no, I have never told any of my patients to do that, otherwise we cant get a guide as to how the thyroid is working!!!!!!
i understand...... i know most GPs will not tell their patients "test early am and take that days levo after the test." But then most GP's will also say .... "oh , it doesn't matter what time of day you test TSH ..."
when in fact, the TSH has a circadian rhythm, and if 'borderline' hypothyroid patients are tested at the low point of TSH (around 1=2pm ) many of them will not be diagnosed , but if the same person was tested in the morning they would be diagnosed sub-clinical hypothyroid' and possibly treated at that point .
So it does matter.
Most GP's will deny that it is most accurate to test fT4 levels by leaving 12-24 hrs from last dose levo before the FT4 test ..... they will say " no, there is no need to do that" .. or even "No , it's wrong to do that"........ but in fact , if you do not take time of last dose into consideration when interpreting fT4 tests , and you test during the 'false' peak that occurs 2-6 hours after taking the tablet ... this will show a higher fT4 level than is average for that dose ... and this could lead to inappropriate dose adjustment's being made on the basis of that fT4 Test ... but if you had tested the same person 12-24 hours after the last dose .. then the fT4 test might indicate the dose did not need not be adjusted .
same patient ~ same dose of levo ~ same average level of thyroid hormones in blood every day ...... but 2 potentially different dose decisions arrived at by by total chance depending on what time of day the TSH test was done, and how long after the last dose the fT4 was done:
~test at 1 pm after taking that days levo at 8.30 am ~ GP gets results and says "your dose is too high, i 'll reduce it ".
~ test at 9 am and take that days tablet after the test ~ same GP gets test results and says "your dose is fine , carry on ".
Vets know they have to take the time of last dose into account when testing hypothyroid horses on levothyroxine . ( but arguably vet's are better trained than GP's)
GP's say "it doesn't make any difference" . or "you have to take the tablet that day so we can see how the thyroid is working" both replies are nonsense .. but they are so poorly educated on the subject they don't realise what they are saying is untrue , because their guidelines don't tell them this more detailed information.
Next time a GP (or an endo) tries to tell you how to test ... ask them "what time of day the TSH is lowest ?" .... ask them "how long after taking levo does the peak blood level of fT4 occur ?" ... if they can't answer , then you have your answer about how much they really know about it .
as for the "otherwise we can't get a guide as to how the thyroid is working" comment . That's not really correct either:
TSH takes days/weeks to change in response to lower/ higher fT4 levels. ( this is why you have to wait 6 weeks for your blood test)
So regardless of whether you leave 2 hours of 26 hours gap from your last dose to the blood test, it won't make any difference to your TSH result .
( Leaving a lot longer than 24 hours may begin to alter the TSH slightly , but we are not suggesting leaving off levo for several days .. just delaying taking that days dose until after the test, to avoid the 'false peak' if they happen to be testing fT4 )
Many GP's only test the TSH ( no fT4 ), and when this is the case, leaving 2 or 12 or 26 hours from last dose to test will make absolutely no difference to the TSH result or to the GP's understanding of your thyroid hormone levels on that dose .
The most important thing about accurate thyroid testing is to do it under the same conditions consistently so you can properly compare one test to the next , to see any 'real' change in fT4 / TSH / fT3 levels ,... so, as far as possible , take the blood test under the same conditions each time , same time of day, same gap from last dose.
I've had the tsh argument for years with GP. Have up in the end and went for medichecks and paid a nurse to come first thing. Tsh at Christmas was 8.38. Spoke to gp and he said come up as he was concerned about my feet anyway so then took the opportunity to do the blood tests himself. So 3. 30 in the afternoon hey Ho gone down to just over 5. I'm sure that's why they do thyroid later so it's more convenient to be within the normal range!!! They totally ignore medichecks as well. I don't know what I should do but got until the end of May to think about test. I'm only on 25mcg
I forgot to say, I take good quality vits and minerals.
Remember to stop taking vitamin B complex 5-7 days before test as contains biotin
Important to test vitamin levels annually
Hi Auntbessy.. yes I have both for many years now. It's been a continuous battle For years trying to get help. My b12 is also low ( borderline if I ask my g.p) !!! I have continued to get worse as the years have gone on . I moved to a new G.P and have been waiting since last June to see a neurologist. I don't think my thyriod is ok, I also don't think my b12 is ok. I Hope you get sorted soon . 🙏
Hi
I have underactive thyroid but not necessarily Hashimotos. My antibodies have always been negative, there are other causes of underactive thyroid but autoimmune ones are by far the most common. I also have Fibro, I was diagnosed 16 years ago but my hypothyroid was only diagnosed in 2020.
And you are right, there's no definitive test for Fibro like a blood test or xray. It's diagnosed by tender points that have been there for at least 3 months. You have to have a certain number for it to be Fibro. And they are on each side of the body. Not just one. And obviously other symptoms like widespread pain, fatigue.
Like thyroid diseases the list of Fibro symptoms is as long as your arm. Mine included very poor sleep, IBS, headaches, tingly pins and needles, morning stiffness. Aching, sore muscles.
You might also like to look at Addison's Disease(also known as Adrenal Insufficiency) strongly linked to Hashimoto's (three of us in this family have both). Some of your symptoms indicate so worth checking up. Addison's Disease is pretty hardcore (fatal if not diagnosed) , rare & often missed by Dr's . Please read up about. Add a 9am cortisol test on to your next blood tests which is a basic screening for Addison's
Getting my low B12 treated has changed things for me. Tinnitus, pins and needles and lots of aches and pains have almost gone since injections began. One of the major symptoms was muscle heaviness in my legs, and awful fatigue. I could fall asleep anywhere. Do get that checked! I am still diagnosed with under active thyroid, fibromyalgia, and pernicious anaemia (low B12). Low B12 can be caused by other things not just pernicious anaemia. The results and symptoms are the same though.
Hi,Sorry to hear but have you had an INTRINSIC FACTOR autoantibody test (IFat)?
This will confirm whether you’ve had destruction of gut intrinsic factor which is necessary for absorption of Vit B12 through the diet and supplements?
Hence lifelong im Vit B 12injections.🥺
Hi Ingrid, no I haven't had that test. My B12 is in range but always a bit on the low side. Not enough to warrant any injections according to the GP. My red blood cells are always enlarged and my MCV is always raised. My GP says that this is caused by my hypothyroidism and not any sort of Anemia tho.
I have large red blood cells diagnosed as sideropaenia many, many Yrs ago. Treated with pyrodoxine 50mg daily on prescription. Bella
Ok. 👌 As you know vit B vitamins ( all of them are water soluble) so it’s next to impossible to overdose on them.
I take 1000μg Vit B12 every two days as a supplement. Generally folate is included ie folic acid is included in the tablet because vit b12needs folic acid/folate to be absorbed properly. Hence serum folate levels need to be checked!
Check out serum folate aka vitamin B9 levels:
It is far from being next to impossible to overdose on B vitamins - specifically with vitamin B6.
Excess intake of B6 can cause many issues. Have a read here:
ncbi.nlm.nih.gov/books/NBK5...
Water solubility alone is not sufficient to rule out overdose or toxicity. Think about Potassium cyanide - which is very water soluble and very toxic.
Excess folate can also cause many issues.
Yes absolutely!
But I’m thinking vit C, vit B higher doses relative to the fat soluble ones.
Of course if one drinks excessive pure water everyday even that substance could be dangerous!
I think people here are more on the high deficiency side of the spectrum?
I’m thinking comparatively here as fat soluble vitamins are more likely to be overdosage candidates rather than be metabolised quickly.
Yes agreed. Many on supplements probably take over the RDA amounts? Myself included but…?
I’m now prescribed very high loadings of B12 by im injection and have been missed out/neglected during covid lockdown for the last 2/3 years so I’m hugely deficient and have suffered enough. My own GP admits this.
Yes I had one and it came back negative
I have had Chronic Fatigue syndrome and Hashimotos for 20yrs. The symptoms are pretty similar. When I have a relapse I can sleep 16 hrs a day and all night too.I have just been diagnosed with Type 1 diabetes as well.
Hi
With Fibro I have the opposite problem, my sleep is very poor, light and non restful with frequent waking during the night. It's very common and doctors don't know if the poor sleep causes Fibro symptoms or the Fibro causes the poor sleep. Classic chicken and egg.
If you are eating a healthy balanced diet, you don't need extra vitamins and minerals. I have Hashimoto's and recently been diagnosed with Hyperparathyroidism that might have been masquerading as fibro for the past 30 years. I was never convinced that I had fibro either. Has your GP checked your vitamin D, Calcium levels and Parathyroid Hormone levels? You would have to come off the vits and mins for a week before testing.
With Hashimoto’s, poor nutrient absorption and low vitamin levels are extremely common
it doesn’t how good your diet is if you can’t absorb the nutrients
Approx 80% Hashimoto’s patients develop gluten intolerance, further 5% are coeliac
Approx 60-70% are lactose or dairy intolerant
I have just gone back to my recent blood records (Feb 2022) My serum ferritin was 29 (range 10-300), B13 294 (range 180-1000) and the mean cell haemoglobin which is always out if whack 33.5 (range 27-32). All other test results were ok.
Ferritin is deficient
Are you vegetarian or vegan
Pre or post menopause
cks.nice.org.uk/topics/anae...
In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency
Request GP do full iron panel test for anaemia
Meanwhile
Look at increasing iron rich foods in diet
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
List of iron rich foods
Links about iron and ferritin
An article that explains why Low ferritin and low thyroid levels are often linked
preventmiscarriage.com/iron...
irondisorders.org/too-littl...
davidg170.sg-host.com/wp-co...
Great in-depth article on low ferritin
oatext.com/iron-deficiency-...
drhedberg.com/ferritin-hypo...
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
Thyroid disease is as much about optimising vitamins as thyroid hormones
healthunlocked.com/thyroidu...
restartmed.com/hypothyroidi...
Post discussing just how long it can take to raise low ferritin
healthunlocked.com/thyroidu...
Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing.
It’s possible to have low ferritin but high iron
Medichecks iron panel test
medichecks.com/products/iro...
Iron and thyroid link
healthunlocked.com/thyroidu...
Posts discussing why important to do full iron panel test
healthunlocked.com/thyroidu...
healthunlocked.com/thyroidu...
Chicken livers if iron is good, but ferritin low
What vitamin supplements are you currently taking
supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial. This can help keep all B vitamins in balance and will help improve B12 levels too
Difference between folate and folic acid
chriskresser.com/folate-vs-...
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 or Jarrow B Right are recommended options that contains folate, but both are large capsules. (You can tip powder out if can’t swallow capsule)
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...
Low B12 symptoms
b12deficiency.info/signs-an...
If serum B12 result below 500, (Or active B12 below 70) recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months, then once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.
B12 sublingual lozenges
amazon.co.uk/Jarrow-Methylc...
cytoplan.co.uk/shop-by-prod...
healthunlocked.com/thyroidu...
In the week before blood test , stop vitamin B complex (as contains biotin) and just take separate folate and separate B12
I just had a quick Google as to why my haemoglobin is ok but my ferritin is low and it came up with anemia caused by inflammation which is a specific type of anemia. I will bring this up with my doc.
I used to take Jarrow B12, now take Solgar. Both sublingual. Thanks for all the suggestions! I'm not vegetarian or vegan. Used to be veggie until about a year ago. Can you help me to understand how my B12 is in the GPs range of normal but my MCH is high which indicates macrocytic anemia?
I am the same Hashimotos with bells on and then messed around by our wonderful health service for 5 years with hyperparathyroidism so osteoporosis deteriorated a further 12 percent to very severe. I hope you sort your parathryoid problem out soon. I ended up having to pay £11k just prior to first lockdown in 2020. I do disagree with the nutrients being in food. Firstly the food these days is not that great or fresh unless you grow it yourself and secondly some of us do not absorb well so I tend to spend a fortune on supplements, rightly or wrongly.
Low ferritin can often be low with thyroid problems.
Have you had your Calcium, pth and ionised calcium tested. Your GP needs to rule out hyperparathyroidism before he says you have fibro and he does need to check your ANA levels , RF , lupus markers etc . However it’s mainly hyperparathyroidism that caused terrible symptoms and people often get it confused with thyroid disease. He definitely needs to check … fatigue ,aches and pains , Insomnia, bone pain , back pain , constipation, brain fog , depression, flatness , nocturia. Good luck
OK so the good news is my GP is going to do a full thyroid function panel. However, they disputed me having an iron problem because although my ferritin is 29 my haemoglobin is within range. Furthermore, although my MCH is always high my B12 and folic acid is within range. They attributed the later two issues to my thyroid and that was that. Is this the typical response from GPs? I am definitely going to try and build my ferritin up but unsure how to improve my B12 with what I am already doing.
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