Bloods seem ok but very symptomatic

[KCFryer]

Hi everyone! Would really appreciate your thoughts on my last blood tests. I asked GP to look into everything they could and I'm glad they promptly tested me.

FBC is normal (unless there's anything that should be optimal).

FSH doesn't show any signs of perimenopause.

TSH, FT4 and FT3 have increased a bit compared to my last test in March this year.

Sugar levels normal

Vitamins could be slightly better, but I honestly don't think it's what is causing me the symptoms I'm experiencing. Was waiting for the results to decide which supplement to start with.

Basically I feel very lethargic, headaches, cognitively very slow (brain fog) and very achy most days and have two days of energy and insomnia. Have strangely put weight on while breastfeeding in the past 2 years.

In 30 years being a hypothyroid, I've never felt great, but I'm not coping anymore feeling so bad. Today I feel great, but feel anxious that tomorrow I won't be. I cannot leave bed before 9 ish and need to be fit to look after my 2 year-old daughter.

Will see an NHS Endocrinologist face to face next week. He listens and seems to be very knowledgeable. But I need someone to try helping to guess what's wrong with me. I always feel better off levothyroxine, perhaps too much T4 is causing the symptoms or T3 is not going everywhere it should? Sorry it's a long text! Thank you!

Serum follicle stimulating hormone level 2.6 u/L - FSH Reference ranges :Follicular ref.ranges:FSH:3.5 - 12.5 IU/LOvulation phase ref.range:FSH:4.7 - 21.5 IU/LLuteal phase ref.range:FSH:1.7 - 7.7 IU/LPost-menopausal range :FSH:25.8 - 134.8 IU/LImmunoassay tests  

Serum TSH level 1.5 mu/L [0.27 - 4.2]

Serum free T4 level 20.9 pmol/L [12.0 - 22.0]

Serum free triiodothyronine level 5.0 pmol/L [3.1 - 6.8]

Pathology Investigations Blood haematinic levels  

Serum vitamin B12 level 477 ng/L [197.0 - 771.0]

Serum folate level 4.5 ug/L [3.0 - 20.0]

Serum ferritin level 56 ug/L [13.0 - 150.0]

Serum total 25-hydroxy vitamin D level 52.3 nmol/L; NB:Reference comments altered to advise treatment.<25 nmol/L : Vit D deficiency, requiring replacement25-50 nmol/L : Vit D insufficiency, consider replacement50-150 nmol/L : Adequate Vitamin D status.

Chemistry Tests  

Serum calcium level 2.40 mmol/L [2.25 - 2.55]

Serum albumin level 48 g/L [35.0 - 50.0]

Serum adjusted calcium concentration 2.28 mmol/L [2.2 - 2.6]

Serum alkaline phosphatase level 48 iu/L [30.0 - 130.0]

[jrbarnes]

I was put on Levo back in 2010, had symptoms for 13 years prior starting at age 14 but only diagnosed in 2007, which led to a partial thyroidectomy. I'd say for the first 6 years on Levo I was able to function normally, go to sleep, wake up feeling like a normal person but like you say never felt great, but good enough to live a normal life. In fact I felt more normal with only half a thyroid gland and no Levo! My TSH, FT4 and FT3 looked exactly like yours and soon after the symptoms started up my FT3 levels took a significant drop. Suddenly ,at 36 years old, I'd have days where I could barely get out of bed, felt so lethargic, and couldn't stay asleep. Finally, at the end of 2019 crashed to the point it was necessary to take a leave from work. So that's where I'm at now is trying to correct all these issues.

As to what caused all this has been a two year mystery but it's a combination of things and it starts with the hypo and then the Levo. I recognize a pattern in your TSH, FT3, FT4 that is similar to mine, when on Levo. I always had a TSH that was somewhat elevated for how high my FT4 and FT3 were. Patients like this always confuse physicians. You have a non suppressed TSH, excellent FT4 and decent FT3 levels so why don't you feel great. The truth is that you're not actually getting enough T3. It's known that "Higher serum T4 levels in patients taking monotherapy may impair systemic T3 production via deiodinase pathway downregulation." The reason I never felt great on Levo, even though my FT3 levels were looking optimal, is that I still wasn't getting the T3 I needed. Eventually the rest of my thyroid gland stopped producing any extra hormone and this is when things went further downhill. There I was pumped up on T4 hormone, no working gland, and low amounts of T3, which led to heavy cycles and low ferritin, which led to even more fatigue and exhaustion. On top of that the hypo caused a severely low appetite, which led to under eating and even worse conversion. I always had FT4 levels at the top of the range and over but I can no longer keep them more than 18pmol/L but this leaves me hypo of course! The only way I could correct this was to significantly lower how much T4 I was taking and start taking a lot of T3 with it. I'm on around 50mcg of T4 and close to 30mcg of T3, still raising and adjusting. I'd recommend taking some methyl-folate and B12, get a full iron panel.

[KCFryer in reply to jrbarnes]

Thank you so much for you time Jrbarnes! you've described very well what is happening with me. My appetite is incredibly low! I had forgotten to mention that. And the days I'm lethargic, I'm dragging myself around the house and cannot even speak properly. Cannot leave bed early and my whole body aches, specially knees. GP pulled out all possible causes for my symptoms. Now I'm always fearing this is going to happen the next day, therefore it's affecting my social life. The other thing you said that relates a lot to me, is that I feel much better when not taking levothyroxine. I'll look into the vitamins and suggest the iron panel to the consultant I'm seeing next week.

[jrbarnes in reply to KCFryer]

I recognized it immediately the way you described your symptoms then looking at your labs. Most of the time you'll see people with a more suppressed TSH who have higher FT4 and FT3 in the upper range. These are the people who have difficulties with their physicians and repeatedly told they need to lower their Levo but then you have a small group of people who continue to have a TSH around 1.5 or higher on Levo. It's not more than 2 and not under 1 so your physician thinks you're adequately treated but obviously you're still having symptoms and not 100%. In most cases for these people trying to increase the Levo does not help.

[TiggerMe Ambassador]

Ferritin, folate and Vit D all stand out as very poor

[KCFryer in reply to TiggerMe]

Thank you for your thoughts Eeyore100!

[TiggerMe Ambassador in reply to KCFryer]

Thyroid results not too terrible but the others being that low will make you feel hypo 🤗

Sorry short and to the point...trying to eat a salad 😬🙃

Need to sort those out before changing dose