Just had interesting private endocrinology appointment. Back in late September last year had sudden onset crippling fatigue and muscle weakness. 4 weeks later was finally diagnosed as hypothyroid, initially treated with 50mg Levothyroxine, and 2 weeks after increased to 100mg due to inflamed thyroid gland. Long story short, my levels are now in the so called “acceptable” ranges, and yet I still feel very fatigued, with muscle weakness, brain fog, feeling cold, etc, so via my work health cover, managed to get a private endo appointment. Dr (name redacted by admin) seems to think that due to me not having the Hashimoto antibody, that it was more likely I was at the time suffering from Thyroiditis, and although I needed Levothyroxine in the beginning due to my abysmal levels (TSH 115 (0.55-4.78) and TS4 <3.9 (11.5-22.7)), I am now being overtreated, as my thyroid is probably recovered. Results from bloods in January show TSH at 0.95 (same range) and T4 at 14.5. He has recommended I reduce my Levothyroxine dose to half (50mg), and have bloods retested after 4 weeks; if they stay the same and I feel better, he thinks I can stop the Levo completely.
Has anyone else come across this as a diagnosis? I am happy to try reducing the tablets, as I am desperate to get back to work; I haven’t been able to work for the past 5 months because of my symptoms. I already feel lousy, so if I get worse for a short while, it doesn’t really make any difference to me, whereas the chance of feeling better is worth a go. Researching Thyroiditis doesn’t really give much info, but I would have thought if I didn’t need the Levothyroxine, my levels would be higher, and I’d have symptoms of hyperthyroid? Don’t want to doubt the consultant, but interested to hear if others have had a similar diagnosis? Have you tried to reduce/stop Levothyroxine, and did your symptoms improve?
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These results from January 2025 do not show over medication to me. Was FT3 tested? What time was the blood draw? Did you take daily Levo before or after the draw?
I also think that reducing from 100mcg to 50mcg Levothyroxine is a substantial decrease in one go- If you were to reduce, I would consider a smaller dose initially.
(I removed name of endocrinologist in your post, as per forum guidelines)
T3 level was 5.2pmol/L (3.5-6.5). Bloods taken at 8.20am, last levo dose taken 24 hours prior, b vits (including biotin) stopped 5 days before, only water taken before test.
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
I understand you asked the forum previously for an endo recommendation. Was this endo recommended to you on the TUK list (link supplied in previous post)? Recommended by another member? (Please don’t name the endo or individual members in your reply)
As SlowDragon suggests, I can only assume they are a diabetes specialist
Since joining this forum I, like many others here, have learned to become an advocate for my own health. I would definitely look to test key thyroid vitamins as a next step and check TPO and TG antibodies (unsure if both tested previously?)
Hedgeree noted in a post tonight that Medichecks are offering 20% off their advanced thyroid test with code SHH20…I thought this worth sharing if you are considering further testing for antibodies/key vitamins (although other testing companies are available/ also recommended!)
I’m reading this with interest. I think the private specialist I saw was more a diabetic specialist than thyroid. He was on the list so I thought he would be ok. He told me I gave a false blood test as I didn’t take my levo the morning of the blood draw and that he thought my fatigue and pain, dry eyes, dry everything, hair loss, wobbly nails, constipation etc could all be put down to hrt issues. Even though I had given borderline thyroid results since 2014. Now, I know that my hrt is spot on as it took a specialist a good couple of years to find the right balance for me, so I’m inclined to disbelieve the Endo. Who really wanted me on stronger oestrogen (which my body doesn’t like - I have pessaries which work and progesterone capsules. I did get a minor levo increase from 50mg levo to 50/75 alternating days 🤷♀️. I was completely exhausted, frustrated and deflated after my apt, it felt like a complete waste of my time and money. However, I’m trying now to think positively, I’ll get a private blood test in 3 months and see if the results are any different 🤷♀️. I do feel for you. I hope it helps to know that you’re not the only one struggling.
Definitly gluten intolerant, have got bloating and abdominal discomfort if i eat too much for over 15 years, but have been tested for celiac, and negative. On your recommendations Slow Dragon, am now taking Better You vitamin D & K2. First lot of Levo was 5omg, and different make to the 100mg I am now on (Tevo), but tevo is the only make I have had on 100mg. Weight is 88KG, and I am sure you already suggested that i should be on a higher dose. I will look at getting full bloods done privately, but just so tired and losing the will to do the work my Dr's should be!!!
Many patients do NOT get on well with Teva brand of Levothyroxine.
Teva is lactose free, but contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome
If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient.
If symptoms or poor control of thyroid function persist (despite adhering to a specific product), consider prescribing levothyroxine in an oral solution formulation.
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
Definitly gluten intolerant, have got bloating and abdominal discomfort if i eat too much for over 15 years, but have been tested for celiac, and negative.
So are you now on absolutely strictly gluten free diet
If not ……strongly recommend you try this for 3-6 months assuming it helps stay on it
I'm not currently fully gluten free, as I find it difficult to keep to a gluten free diet; i do exclude a lot of gluten, but not all. But, I will try again if it means I may get some relief. I hardly eat any dairy, but again will exclude if it may help. Husband is lactose intolerant, so we already have diary alternatives in the house. I know we all have our own struggles, but finding it difficult to accept another chronic condition while already having to live with type 1 diabetes. Getting an insulin pump last year has helped my blood sugar levels (which menopause and thyroid issues have made worse), but feeling overwhelmed with this added condition. So glad you guys and girls are here, know you have suffered too, and understand how I am feeling. Which is awful.
Oh doubt him, doubt him! I really don't think he knows what he's talking about. Thyroiditis just means swollen thyroid, and yes, it could have recovered from that. But that doesn't mean it's working correctly again. A failing thyroid does not recover.
FT4: 14.5 pmol/l (Range 11.5 - 22.7) 26.79%
FT3: 5.2 pmol/l (Range 3.5 - 6.5) 56.67%
Hashi's is often called Hashimoto's thyroiditis because the thyroid is under attack and it swells. Now take a look at your results converted into percentages and you'll see:
a) your FT4 is very, very low - especially for someone on thyroid hormone replacement. It's too low for good health. That is not the FT4 of someone whose thyroid has 'recovered'.
b) look at your FT3. It is quite a bit higher in-range than your FT3. That is not 'normal' and can mean one of two things: i) your thyroid is failing - well, it probably is but taking levo should have ironed out that anomaly ii) you do have Hashi's.
As SlowDragon has pointed out, there are two Hashi's antibodies: TPOab and TgAB. It's quite possible that your TgAB are high even though your TPOab are negative. And, even the fact that they were negative when tested cannot fully rule out Hashi's because antibodies fluctuate all the time. Plust the fact that not all Hashi's people even ever have positive antibodies, but they still have Hashi's.
So, you probably do/did have thyroiditis but that's part of the disease, not a temporary condition that gets better.
And he doesn't even know how to dose levo. Reducing by 50 mcg in one go is not a good idea. And the idea that you can just stop it is wishful thinking. With levels like that I certainly wouldn't recommend it! Run away from the endo as fast as you can! He's going to make you very ill.
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