Please help with return of symptoms - GP says he has no explanation

[RebP]

I was diagnosed in March 2018

Blood test TSH level 5.1

I was given 50 micro grams of Levothyroxine.

This made me feel a lot less tired and all my other symptoms went. I stopped putting weight on but still couldn’t lose any. I felt like I could have benefited from a tiny bit more Levothyroxine but blood test came back within range.

Blood test July 2018 - TSH 1.8

Thyroid peroxidase Abs 14.0

However over the next 5 months all my symptoms came back (tingling and dead arms, constipation, extreme tiredness, cramp in legs, waking up with a headache that stays all day and being cold).

I had another blood test which again came back in normal range.

Jan 2019 TsH level 2.2

I have since had a general fatigue screen which again all came back within range

FBC

Hb 136 g/L

WBC 6.9 10^9/L

PLT 290 10^9/L

RBC 4.28 10^12/L

HCT 0.395

MCV 92.2 fl

MCH 31.9 of

MCHC 346 g/L

DIFF

Neutrophils 3.5 10^9/L

Lymphocytes 2.7 10^9/L

Monocytes 0.6 10^9/L

Eosinophils 0.1 10^9/L

Basophils 0.0 10^9/L

B12 358 Ng/L

Folate 8.3 ug/L

Sodium 138 mmol/L

Potassium 4.8 mmol/L

Creatinine 62 umol/L

GFR CKD-EPI >90 mL/min

Ferritin 88 ug/L

HBA1c (IFCC) 31 mmol/mol

Total protein 75 g/L

Albumin 45 g/L

ALT 20 iu/L

Alk.Phos. 61 iu/L

Total Bilirubin 6 umol/L

Globulin 30 g/L

When my symptoms came back I improved my life style running 2/3 times a week, eating 8 fruit/ veg portions a day, having more oily fish and buts and reducing carbs. This has helped but not enough.

I was wondering if anyone had any advice or avenues for me to explore?

Thank you

Rebecca

[Rapunzel]

GP has no explanation has he sent you away with a flea in your ear like mine did? Rejoice you are in range. B*ll*cks, you tool.

I'd have a word. 50mcg is a starting dose, and there should be increases and blood tests every 6 weeks until you feel well. The aim should be a TSH around 1 if he's going to measure your 'recovery' that way, and he's left you hanging too high, the muppet. Some of us need a suppressed TSH and a clueless GP may find that worrisome. You may be depleting what T3 you have with your exercise but in your moccasins provided I wasn't feeling too meh I'd keep it up for the endorphins.

My first step if s/he is unwilling to increase levo would be a T3 test. If your TSH is creeping up again as evidenced by your (inadequate) thyroid bloods you need to nip this in the bud. Blue Horizon and Medichecks will test your full thyroid panel and some important vitamins which need to be optimal for thyroid meds to work and there are fairly regular special offers here on TUK giving a discount to what civilians would pay. I think it's less than a ton.

Good luck

[bantam12]

Your tsh is to high and 50mcg is a starting dose so you need an increase, your GP clearly isn't very good at thyroid stuff so change to one who can treat you properly. Tsh should ideally be 1 or below, T4 and T3 usually mid to upper in the range, if the GP won't test these you can order online a finger prick test, I use Medichecks.

[SeasideSusie Remembering]

RebP

Testing TSH is not enough. You need FT4 and FT3 testing - these are the actual thyroid hormones (TSH is a pituitary hormone, it looks to see if the thyroid is producing enough thyroxine, or if you are taking thyroid hormone replacement it will tell you if you are taking enough). When on Levo only, the aim of a treated hypo patient generally is for TSH to be 1 or lower with FT4 and FT3 in the upper part of their ranges if that is where you feel well.

So your January TSH of 2.2, even though within range, is not low enough. You need an increase in your dose of Levo, 25mcg now, retest in 6-8 weeks' time. Important to test FT4/FT3 as well but often not done which is why so many of us here use private testing.

Use the following to support your request for an increase in dose:

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the magazine 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).*"

*He recently confirmed, during a public meeting, that this applies to Free T3 as well as Total T3. You can obtain a copy of the article by emailing Dionne at

[e-mail]

print it and highlight question 6 to show your doctor.

Also some of your symptoms could be due to low nutrient levels, ask for the following to be tested:

Vit D

B12

Folate

Ferritin

P.S. Always include reference ranges with any test results, these vary from lab to lab so to interpret your results we need the ranges from your lab. TSH is about the only exception to this, ranges are so similar we know when that is too high.