Hello, I've been here at the beginning of the year when I was suffering a great deal from an unknown Thyroid problem. I was referred for an urgent Thyroid surgery to remove the right side of my thyroid due to nodules and suspected cancer. After a second and 3rd opinion, I was finally diagnosed with Subacute Thyroiditis and I avoided the surgery. Something I have suspected from the beginning. I have been very ill from November until late march when finally the fever and extreme pain went away. But I'm still not quite right. I can't do anything which will get me tired. Yesterday I went for a walk in the forest and today I'm so exhausted. My hand's joints are aching, I feel so swollen. My feet, hands and face are swollen. I feel nauseous. It happens every time if I don't sleep enough or do something physically straining or have a glass of wine or any alcohol. I've been on 50mcg Levothyroxine for about 2 months and I can see a difference. Even my mood is better but I still get those days like today when I can't basically leave the bed. I'm also quite dizzy often, I get delicate tingling in my lips and fingertips. I honestly can't go on like this any longer. Since I started thyroxine some things improved like the brain fog, migraines but I still can't lose any weight and my periods changed to only 3 days. I'm only 40.
My last bloods showed;
TSH 2.77 mU/L (0.35-5.50 mU/L)
Free T4 14.9 pmol/L (10.5-21 pmol/L)
Which to me looks normal. T3 or antibodies were apparently not needed.
I've been suffering similar symptoms for almost 9 years and no-one could ever tell me what could be the problem. I would only be tested for TSH few times which suggests came back normal so none had any more look into my thyroid. When I mentioned this to my endo, he said that it's unlikely I have Hashimotos and the symptoms sound like Chronic Fatigue post Mononucleosis however you don't gain weight and lose ton of hair from CF.
Any advice please. I'm so depressed from this constant rollercoaster. One day some everything and feeling normal and basically next day a pay off and feeling unbearable.
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bajmon
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Fine tuning of the dose could be necessary in some patients
* aim of levothyroxine treatment is to make the patient feel better, and the dose should be adjusted to maintain the level of thyroid stimulating hormone within the lower half of the reference range, around 0.4 to 2.5 mU/l. If the patient feels perfectly well with a level in the upper half of the reference range, then adjustment is unnecessary
How can blood tests be used to manage thyroid disorders?
.....
Occasionally patients only feel well if the TSH is below normal or suppressed. This is usually not harmful as long as it is not completely undetectable and/or the FT3 is clearly normal.
There are also certain patients who only feel better if the TSH is just above the reference range. Within the limits described above, it is recommended that patients and their supervising doctors set individual targets that are right for their particular circumstances.
.....
Also, Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the professional publication for doctors):
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l. In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l. This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l).*"
You can obtain a copy of this article from Dionne at ThyroidUK:
tukadmin@thyroiduk.org
print it and highlight Question 6 to show your GP.
To rule out (or in) Hashimoto's ask for thyroid antibodies to be tested - Thyroid Peroxidase (TPO) and Thyroglobulin (Tg).
I'm also quite dizzy often, I get delicate tingling in my lips and fingertips.
I would get key nutrients tested:
Vit D
B12
Folate
Ferritin
These all need to be optimal for thyroid hormone to work properly.
If you have Hashi's then it's often the case that Hashi's causes gut/absorption problems that lead to low levels of nutrients or deficiencies.
If you GP can't or wont get all these tests done we have recommended private labs that do them as a test bundle which can be done with a fingerprick test or, for extra cost, venous blood draw can be arranged.
Thank you for your quick reply. I just had a look and have been on levo for 11 weeks. What worries me is whether Levo is needed at all. Whatever I read about Subacute Thyroiditis is that the last part of the illness, which can last very long, is hypo which should regulate by itself in most people and taking levo is not recommended. I definitely have improved but this is also due the mid part of the illness and infection is over now. So this alone obviously made me feel better. I can't really tell if it's Levo which made any difference as well. I only seen my endo once over the Skype call and then communicated via emails. I'm not really under anyone's care. My GP is a different doctor every time and they only give me another prescription that's all. The endo is private and seems to not be offering another consultation. He's been great so far but I think it's time to meet face to face and have an actual follow up. I will look into all those suggested additional tests too. I had vit D tested several years ago and was almost undetected. I've been occasionally taking supplement especially last year when I was suffering from Covid19 and last results (which I can't now find) showered good levels.Those TSH and T4 results are from 21/04 and the previous ones at the pick of the ST infection were in January and showed;
TSH 1.37 mU/L (same as above)
Free T4 13.4 pmol/L (same as above)
Free T3 5.0 pmol/L (3.5-5.6 pmol/L)
Also TSI <0.10 iu/L (<0.56 iu/L) and TPA 38 iu/L (0-60 iu/L).
If Levo was meant to lower TSH then it doesn't look like it did since TSH is now higher.
Hi. You should have another blood test at three months. My doctor said the TSH should be under 2 and the T4 around 8. Yours still look too high. Ring the GP explain the symptoms have they also checked for anaemia ie iron and b12 as levothyroxine can interfere with the absorption of vitamins. I was short of both last year and now take multivitamins from a company called Feel. I also need to take extra vitamin D. The symptoms are very similar especially the fatigue. Don't be fobbed off however it can take a couple of years to get the dose right.
Thank you for your reply. I'll contact my GP and the endo. I have not been tested for much. None of the fixtures send to care. GP had not much to do with it and the Endo is private so it feels like I have to force any communication myself rather then being actually followed and under any constant care. I hope not to be needing Levo for add long as two years as hypo post Thyroiditis should settle itself eventually. I just can't stand feeling so rubbish all the time. Pre the Thyroiditis, I would go through basic blood checks and some more independent because I was constantly tired, didn't matter how much I slept I was never refreshed because this happened after glandular fever I was told it could be Chronic Fatigue and nothing was done about it. It's terrible and I myself work for NHS in cardiology so I know how to care for patients well.
If you have underactive thyroid you will need to.take it all the time. Please get checked for the iron etc as someone who had iron deficient anaemia and low b12 I felt fatigued a lot of the time. Lack off vitamin D gives me restless legs and lack of concentration. The GPs need to do a full blood test. They can all be related. Good luck and just keep on at them.
Hi, really sorry you are suffering. I have Hashimoto’s and Post-Viral Fatigue Syndrome from EBV also. I largely ignored the post-viral fatigue diagnosis, but when lockdown happened it forced me to “pace” myself and I did feel a little better at times. Then had a flare up of symptoms like nothing before and endo said not thyroid related. I take 125mcg levo. It’s very frustrating not being able to do anything to fix yourself. I have focussed on getting vitamins optimal, and not doing exercise or restricting calories, though I do control carbs as I know it makes me feel better. I don’t eat gluten or dairy strictly, and avoid soy as best I can. These things helped a bit. This is obviously just based on me and likely coincidental, but since I got the Moderna jag 3 weeks ago I have been fine, as in totally fine. No cold hands, no unusual tiredness, no aches and pains, and not struggling to get out of bed. I feel in saying this I could get a barrage of abuse, as clearly this is very weird and non-scientific! But your situation sounds very similar to mine so felt the need to share.
I'm no expert, but having a thyroid disease myself, I do sympathize. Things are definitely far from right with you and you are still quite young. My advice is to keep a regular health diary to monitor your progress and be aware that your medications will probably need to change over time. As well as an increase in Levothyroxine, you may also require some T3. Make sure you see the doctor regularly for regular tests and keep him updated. I had no obvious gut symptoms, but find that some of side effects such as breathlessness have improved somewhat since I went gluten free a few months go. Keep strong and remember you are not alone. Best wishes.
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Help with results please
Monitor my health test results
test results-no meds or diagnosis
Feeling very puffy on levo and HRT
NHS endocrinologist appt a waste of time as I expected - I just want to cry!
