Thankyou in advance for any advice provided. For over 3 yrs I have suffered with muscle fatigue, joint stiffness and pain, excessive thinning hair, dry brittle nails and skin, tiredness where even 8 hours sleep doesn’t stop me falling asleep. I eat healthy with an BMI of 20.2, exercise daily by walking minimum of 2 miles. The joints/muscles affected are neck, back, hips, knees and wrists, some days I have to use two hands to hold a mug of tea. In February due to the hair thinning I paid to see a Trichologist who confirmed that I had an uncommon condition called Short Anagen Syndrome, he requested I ask my GP to test my TPO, although I have had my Thyroid checked previously I was always advised that within range. Below I have detailed results for last three tests
Oct 19. TSH 3.38. Free T4. 14. Serum Free 4.5
Feb 20. TSH. 4.18. Free T4 14. Serum Free 4.9
May 20. TSH 5.04. Free T4 14. Serum Free. 5.1
TPO. Feb 20 was 239
TPO May 20 was 273
The hair specialist when informed of the TPO result advised me to discuss Hasimoto disease, however my doctor advised as I didn’t have a goiter then I didn’t have Hasimotos. He has tested for Lupus but this came back negative. I have been advised to wait another three months for a blood test even though I questioned why wait for symptoms to get more progressive. I have asked for a referral to an Endricologist but he said there is no need but would refer me to a private consultant. On a final point my mum, sister, brother and daughter all suffer with autoimmune thyroid disorder.
I would welcome any feedback with regard to advice on what to do next, do I wait or insist they refer.
Many thanks
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karen1507
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I'm afraid we'd need the ranges for those results to make any sense of them, because ranges vary from lab to lab. But, looking at your TSH, you are technically hypo, but your doctor won't admit it until the TSH gets a lot higher - possibly to over 10.
my doctor advised as I didn’t have a goiter then I didn’t have Hasimotos.
Silly man. You don't have to have a goitre. You could have what is actually called Ord's Thyroiditis, which is the same as Hashi's, but doesn't have a goitre. But, if your antibodies are over-range, then you have an autoimmune thyroiditis, no matter how much he kicks and screams. Actually, there's rarely any point in trying to discuss Hashi's with a GP, because they just don't know anything about it. All they know is the TSH, and that isn't high enough to convince them, I'm afraid.
Sorry, forgot about that, thankyou for responding.
TSH range 0.35- 5.5 mu/L
Free T4 range 9- 23 pmol/L
Serum Free range 3.5 - 6.5 pmol/L
TPO range 0.00- 59.0 ku/L
The comment on the TPO result from the lab was "Above high reference limit Thyroid Perozidase Antibodies Positive. There is a very high likelihood of developing autoimmune thyroid disease. Suggest repeating thyroid function tests initially at 3 monthly intervals.
On each of the three tests doctors have listed tiredness, hair thinning, myalgia and arthralgia as clinical information. I have been offered no advice or medication with regard to any of my symptoms.
Serum Free 4.5 (3.5 - 6.5) I presume this is Free T3?
Feb 2020
TSH 4.18 (0.35-5.5)
FT4 14 (9-23)
FT3 4.9 (3.5-6.5)
TPO 239 (0.00- 59.0)
May 2020
TSH 5.04 (0.35-5.5)
FT4 14 (9-20)
FT3 5.1 (3.5-6.5)
TPO 273 (0.00-59)
If you could write your labs like this in future, it would be a great help to those reading them. Thank you.
So, your antibodies are very high. Absolutely no doubt you have Hashi's (or Ord's, comes to the same thing).
But, with those results, there's no way any NHS doctor is going to diagnose you as hypo. Technically, you are hypo when your TSH gets to 3, and in some countries you would be diagnosed at that point. But, as I said above, the NHS likes it to get to 10! And, although your TSH is creeping up, so far it hasn't been above that stupid range.
And your FT4/3 aren't that low, either. The FT4 is always 45.45% through the range, and the FT3 was 53.33%. Which is euthyroid. The fact that it's only that high because either the high TSH is driving conversion, or the thyroid is upping it's production of T3 over T4 to keep you alive, would escape most doctors. They wouldn't know about that. Doctors just don't know that much about thyroid.
And, doctors no-longer diagnose on symptoms - they have no idea what the symptoms are, for the most part, because they don't do it in med school.
So, as I see it, you have two alternatives: a) wait until the TSH goes higher, testing every three months, or b) bite the bullet and self-treat - which has both advantages and disadvantages. But, there's no way you're going to convince your GP that there's anything wrong whilst your TSH stays in range.
Thankyou, sorry I'm on phone texting, haha will display in suggested format at next result. So with Hashimoto, until my TSH is stupid level I wont be able to receive any medication to ease symptons and have to wait for Thyroid to malfunction in order to get a diagnosis for Hasimotos, that's appalling considering how I've felt last 3 yrs and each day is getting worse. Thank you for taking the time to reply, much appreciated.
Yes, it is appalling. And it ought to be illegal. But, that's the state of endocrinology at this time. They just don't want to diagnose people with under-active thyroid, and will go to great lengths not to do so.
Karen my reading was over 14 before I was given thyroxine. I’ve now been taking it for almost 6 weeks. Prior to that my GP was insisting that I was borderline but not quite there! It’s a frustrating road. I have had all of the symptoms of being hypothyroid for as long as I can remember, muscles weakness being the main problem, even though I continued weight bearing exercise, thinking I was unfit but when I mentioned it to my Endo, it seemed to be brushed aside. My hair is thinning rapidly at the front of my head, which for a woman is really worrying.
As you have thyroid antibodies, it's very likely you have vitamin deficiencies. Have you had Vit D, B12, folate and ferritin tested and if so, do you have the results?
with Hashimoto’s we frequently have very low vitamin D, folate, B12 and ferritin levels
Ask GP to test vitamins and also coeliac blood test too
Joint pain often low vitamin D
Hair loss low ferritin
Brittle nails low B vitamins
high antibodies this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
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.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct 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 slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Assuming test is negative you can immediately go on strictly gluten free diet
(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
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.
I've been taking B12 and Vit D supplements for coming up 2 yrs now following test in 2018, I dont have these results. Test in Feb 2020 detailed below whilst still taking supplements.
Serum Vit B 817ngL (190.0-910.0)
Serum Folate 6.6ng/mg (3.3 - 99999.0)
Not been tested for Ferritin.
I've been refused a trial of levothyroxine as my TSH within range irrespective that it's close to top and high TPO.
You could try arguing that based on Boarderline results and being highly symptomatic and affecting quality of life, Evidents suggests treating. Boardeline reaults and symptoms = hypothyroid, boarderline results and no symptoms = normal.
Also with regard to Vit B and folate supplements, be sure to take the methylated forms. Often hypothyroid comes with MTHFR gene mutation which means you can’t methylated, convert vitamins into their biological form for the body to utilise. Fascinating topic, read about it and get tested if you feel it applies. The symptoms you are describing can be related to it. Your blood levels would show normal. 🤷♀️
Rather than just taking B12 it’s recommended to supplement 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
You can reduce B12 supplement and likely just take vitamin B complex
Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)
Or Thorne Basic B or jarrow B-right are other options that contain folate, but both are large capsules
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results
I've been taking Biotin and hair and nail supplements as my hair is really bothering me, maybe I need to insist on medication on trial basis. Forgot to mention in 52 and been on HRT 12yrs
It sounds like you are talking about me, my legs and arms, fingers toes, and numerous more are causing me unbearable pain. Iv given up asking the doctor she doesn't believe me, so I'm sorry I can't help you, but I keep reading about it on the internet, but there is do much confusion that iv even tried one thing ,but then another web site says don't use whatever, so I think it is a case of trial and error.i just want the day to come when I can get out of bed and stay stood up instead of falling , the same goes for getting out of a chair, my knees are so weak and painful it sometimes brings tears.sorry I can't be helpful, but if I eventually find something I will you know, take care 😷😷
Looks like Hashimoto’s assuming standard ranges on TSH 0.2-4.2.
I had joint pain and fatigue for about 10 years before diagnosis so you’re doing well if they’ve found something after just three years!! Now find yourself a good endocrinologist. NHS or private and then the long journey of trial and error on doses and different tablets. Its a long road but keep going and hopefully youll feel well. Im well now after 4 years or trial and error lol.
Hi karen , it is sometimes possible to get diagnosis before tsh reaches 10 , in uk.
As wetsuiter says. 2 over range results+symptoms + i think ,raised antibodies ,( which you already have.)
your tsh while not 'over' yet , does show a rising trend .
Did you know tsh changes through day ie highest in the early hours, falling to lowest at late afternoon ?
so next blood test make sure you get the earliest possible appt. even if you have to wait a week or two for an appt at the right time . In some people the difference from daily highest to lowest tsh can be quite large and might make all the difference to yours going 'over'
for comparison ,if it is of any help, i got diagnosed (after months of moaning to GP that i wasn't myself,and refusing antidepressants)
20/11/02
"would you like to try some antidepressants?"
16/6/03
tsh 5.7 [0.36-4.1]
tt4 94 [65-155]
"would you like to try some antidepressants?"
23/7/03
tsh 6.8
tt4 91
"tsh increased again, repeat 3m suggested, earlier if symptoms persist"
2/9/03
"in view of borderline TFT's,suggest we check thyroid AB's "
5/9/03
TPOantibodies 2499 [0-50]
1/10/03
" thyroid AB's very high so i assume is in early stages of developing above 'Hypothyroidism' , commence low dose thyroxine and RPT bloods in 1 mth "
many thanks for all your comments, it seems that I'm not really going to have a choice but go privately, my next test is August so with that in mind maybe I should try once more with GP and insist on referral. Really appreciate the time you have all taken to reply.
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