I was diagnosed about 19 years ago with ME/Chronic Fatigue Syndrome.
Every now and again I ask for various blood tests to be repeated to rule out any underlying illnesses that could be masked by the ME (blood count, kidney/liver function etc).
On a few occasions over the past 7-8-ish years, my TSH has been raised or towards the top end of normal. The test would be repeated and it would have gone back to somewhere in the middle of the range.
I've also done a handful of finger prick tests at home over the past couple of years (the ones where you fill tubes and send them away). With these, my TSH has also varied.
So the range over the years has been between 2.9 and 6.9 mIU/L
I mentioned this to a private GP over the summer who wrote to my NHS GP recommending a Thyroid antibody test (which I'd never had). They recently tested my TPOAbs, which have come back at 200 iu/mL (normal range 0-34).
I was asked to come back to discuss my results but have had to wait 3 weeks for that appointment, which is this coming week. Am I right in thinking this indicates Hashimoto's?
My TSH came back at 3.31 mIU/L this time but does seem to vary a bit.
Are they likely to do anything about this or just monitor? Is there anything in particular I should be asking at my appointment?
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I've had moderate ME/CFS, so constant fatigue, muscle pains, brain fog, headaches, digestive problems, all of which meant I had to give up work.
I've also had increasing symptoms that I've always put down to a sensitivity to certain foods but have never been able to identify exactly what and it always seemed a bit vague and changeable.
So if I eat things like takeaways or meals in restaurants I'll usually feel terrible for days afterwards. This used to last about 24 hours but can now last up to a week. Symptoms include increased fatigue, worsened headaches, dry eyes, thirst/dehydration, constipation. When my TSH is checked during these times it is raised.
Slowdragon has provided a wealth of info to peruse!
I will just say - your symptom list is a ringer for underactive thyroid, so your hashis is not surprising.
Also, I read on this forum periodically about people mid-diagnosed as me/cfs, because the NHS has a threshold for diagnosing thyroid that is too high and well beyond the time thyroid symptoms make you dysfunctional.
I don’t know much about Cfs, but from what I gather here, the NHS would see it as cheaper than treating thyroid, which is many times the root cause issue.
Yeah, don't get me started on how people with ME/CFS are treated! But you make a good point about it seeming cheaper to call it all ME/CFS instead of thoroughly checking and having to treat thyroid.
I moved house last year and changed GP and have noticed my new GP uses a higher threshold for TSH. Previous GP and private labs use 4.2/4.5 as the upper reference point but my current GP (or at least the local hospital labs) use 5.5 so that's not great.
Ive heard people here say a TSH of 10 is used sometimes.
I highly recommend reading through posts on this forum, whether you click around or use the keyword search function.
You are at the beginning of a journey where all of us have traveled. Mis-diagnosis, under-treatment, what I think you UK folks call being “fobbed off “ ( did I get that right?!)
The first step in getting the right treatment is to realize you must take control of the educating yourself, determining your own optimal hormone replacement , and advocating for yourself to get your NHS prescription.
This forum has been there/done that, and we are here for you.
Thank you. I've done a lot of reading online already but wanted to connect with actual people who have experience of dealing with all of this. I've found that vital with regards to the ME over the years.
And yes, 'fobbed off' is correct! I've mostly been fobbed off (sometimes worse) by doctors for the past 19 years so I do like to be prepared/armed for my appointments!
Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee
And coeliac test too
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
A trial of strictly gluten free diet is always worth doing
Only 5% of Hashimoto’s patients test positive for coeliac but a further 81% of Hashimoto’s patients who try gluten free diet find noticeable or significant improvement or find it’s essential
A strictly gluten free diet helps or is essential due to gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and may slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first as per NICE Guidelines
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
Similarly few months later consider trying dairy free too. Approx 50-60% find dairy free beneficial
With loads of vegan dairy alternatives these days it’s not as difficult as in the past
Thanks. Blood tests included B12, folate and ferritin. My folate is right in the middle of the range. B12 is high but I take a supplement that contains a lot of B12. Ferritin is towards the low end of normal and has been for a while. I tend to dip below normal once a month during my period.
Coeliac is supposed to be one of the tests done as something to rule out for people with ME/CFS but I've only ever had it done once and my GP at the time was reluctant. It came back negative.
Also, I already try to keep gluten to a minimum (sounds like it might be worth eliminating it for a while) and have had increasing problems with dairy as I've got older so the only dairy I consume is the occasional bit of cheese.
Editing to add:
While my ferritin is technically within normal range (if on the low side) private tests have shown my Total Iron Binding Capacity as high (87 umol/L with upper reference of 77).
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
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)
Post discussing how biotin can affect test results
These are from last month. Vitamin D wasn't tested but last time I had it checked was Sept '22 and it was 60 nmol/L (No range available)
Also had my Free T4 checked privately around that time and it was 11.5 pmol/L (12.0-22.0)
(Edit: Just realised I also had Free T4 checked last March and it was 14.2 pmol/L and in the same test my TSH was 4.48 (0.27-4.2))
I stopped taking my usual supplement over a week ago in case GP wants to do any more tests so I'll wait until after my conversation with them before I review/change what I take.
Just to comment that your Ferritin is very deficient at 17ug/L and could definitely be adding to your symptoms. That range is out of date and my health board in Scotland has certainly revised theirs up quite a bit. You really want it to be over 70. I would supplement with one ferrous fumarate tablet a day away from coffee and tea.
Serum ferritin level is the biochemical test, which most reliably correlates with relative total body iron stores. In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency.
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
Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test
If taking iron supplements stop 5-7 days before test
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
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.
Thank you for your incredible patience while you have been awaiting the outcome of our ferritin reference range review. We conducted this with Inuvi lab, which has now changed the reference ranges to the following:
Females 18 ≤ age < 40. 30 to 180
Females 40 ≤ age < 50. 30 to 207
Females 50 ≤ age < 60. 30 to 264l
Females Age ≥ 60. 30 to 332
Males 18 ≤ age < 40 30 to 442
Males Age ≥ 40 30 to 518
The lower limits of 30 are by the NICE threshold of <30 for iron deficiency. Our review of Medichecks data has determined the upper limits. This retrospective study used a large dataset of blood test results from 25,425 healthy participants aged 18 to 97 over seven years. This is the most extensive study on ferritin reference ranges, and we hope to achieve journal publication so that these ranges can be applied more widely.
No I'm not vegetarian or vegan and my multi vitamin/mineral supplement has iron in it. I think it was only 2 or 3 days between me stopping that and these tests being done. I did start taking them again but stopped again as I mentioned previously in case my GP wants to do more tests.
I was prescribed iron supplements some years ago but my ferritin was lower because that test was done when I was menstruating. They did a routine check a few months later (when I didn't have my period) and stopped the prescription because my levels were within range.
My TIBC is indicative of anaemia and my Mean cell haemoglobin level is right near the bottom of the range: 27.7pg (27-32)
Have you seen dr Sarah Myhill’s site? She is a thyroid and ME expert and much of her advice on nutrition etc is based on what’s helpful for both conditions. She recommends a mostly paleo diet. Worth taking a look though I must add it’s a pretty hard to navigate website!
I particularly like her practical shopping list of healthy stuff to have in. drmyhill.co.uk
Just wanted to share I’ve been in a similar position to you. Fobbed off for years with a CFS/ME diagnosis which is a life sentence for less than good health, when all the time there was a thyroid issue. With a few exceptions, my experience is that doctors are as clueless about thyroid as they are about CFS/ME, probably worse. And I think it’s great that you’re asking the questions you are. You absolutely do have to be your own health advocate with this stuff and this forum is a wealth of wisdom and support.
My reply is based on my own personal experience of having ME initially (after glandular fever) which was followed by the discovery of thyroid antibodies. A few years later I was diagnosed with an under active thyroid that I discovered myself was actually Hashimotos or Ords as I do not have a goitre. I suspect that, as in my case, you may not get medical treatment until the TSH is outside of the normal reference range. In hindsight I now realise that my thyroid function was declining in those first few years and I wish I had taken a herbal supplement to support it and avoid taking thyroxine for as long as possible. I have now been on it for 30 years so goodness knows what it has done to my bones etc.
If I had known about it 30 years ago I would have been prepared to have given it a go and monitored progress. Against 30 years of thyroxine it might have been less troublesome and kept at least some production of natural thyroid hormone
Ah okay, you are going privately. I wasn't referring to an Endocrinologist, unless you find one who treats based on optimal ft3. If you see a private thyroid Dr, not an Endocrinologist you don't need a referral.
I did that. But that was before I found this forum. I assumed a private endo would understand thyroid better than a GP. That was wrong. I have now got to a reasonable place with my endo but I have had to be quite ballsy in the process. In your shoes now, I would do your own thorough testing per SlowDragon ’s advice and bring the results back here. Ask Thyroid UK for its list of preferred endocrinologists too. Be prepared to take the game to them.
Hi I’m sorry to hear you are in the same position as me although I did have a partial Thyroidectomy 28 years ago & started on Thyroxine a few years later. After a virus in 2010 most likely glandular fever ( hubby was seriously ill with glandular fever a year later in hospital for weeks in liver failure caused by it). They tested me & found I had a high amount of antibodies so had most likely had it. Either way I never properly recovered & was diagnosed with CFS. I had no input or tests basically just a name to put when they have no idea what’s wrong with you. Fast forward to 2022 when things spiralled to a level I was mostly bedbound & admitted to hospital. I had the sense to take previous vitamin results in with me. I was told I needed a referral to Endocrinology. My GP refused twice but as it was in my discharge letter he caved in. I got so much help from this group & went armed with paperwork. The Endocrinologist looked at my results on a screen & said you’ve been under medicated for years. I could have hugged him. I’m now on T3 & starting to slowly improve.
So yes get referred to Endocrinology. Get advice from this group & have a list of all your symptoms & blood test results. Maybe you can get a print out of all your previous results from your GP.
Thank you for this and I'm so sorry you had to go through all of that.
Thankfully I have a full copy of my entire medical record as a PDF so that includes test results, at least those done until I moved to a new area and new GP. I also have copies of the private test results and am sure I could get a print out of my latest results, since I can only view those online at the moment.
My appointment this week is over the phone so I plan to have everything up on a screen in front of me to refer to if necessary.
I have M.E and hypothyroidism which I've had to learn more about on here since I was diagnosed many years ago. I think it might have had something to do with me getting M.E too as I used to get loads of 'viruses' in my 20s. I was left on 50mcg thyroxine for 4 years until I became very unwell but I put it down to M.E. It wasn't until I saw a private endocrinologist that I was advised to increase my thyroxine and given T3 (for a while). I'm sure this saved my life. I still have M.E but I'm definitely more stable and have a little more energy than I used to have. I have found that thyroid problems have given me abnormal blood tests on my liver, which I think is pretty common.
So my GP has said that my antibodies 'might' indicate 'something autoimmune' but that they can change over time and my thyroid levels are fine so they want to monitor my TSH annually. 🤨 I asked about possibility of subclinical hypothyroidism and the answer was 'probably not'.
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Test results got the vit D now but not ft3 as lab won't do more thyroid tests <4 wks apart!
Beginners post: Thyroid antibody test results in plain English please 
Blood test results 
blood test results 
