TSH even lower... Feeling worse

[mrsnlw2016]

Hello all,

I was diagnosed in 2014, 5 months post baby, with UAT. I have always been up and down (mainly down) with my symptoms. The worst ones are the tiredness and sensitivity to heat (Going from freezing cold to boiling hot when others are the complete opposite).

I was intially given a dose of 100mg which was too high and eventually dropped to 50mg. I felt better but then felt worse. I alternated doses between 50 and 75, then went onto 75 - all the while my TSH was rising with each thyroxine increase - I then was put onto 100. The TSH tailed off from 3.4 to 1.2 and I was told to continue. This was fine until recently when the exhaustion returned. I had a blood check on Friday and the TSH has dropped further to 0.21.

I am fed up of feeling like this but also fighting with my Dr ove rit. They keep saying it's within normal range it's fine. I have had a series of bloods (not just TSH) and all came back fine.

Recent results below.

14 Oct 15Serum TSH level0.73 mu/L0.2 - 4mu/L

25 Nov 15Serum TSH level2.3 mu/L0.2 - 4mu/L

17 Feb 16Serum TSH level1.4 mu/L0.2 - 4mu/L

05 Jul 16Serum TSH level2.9 mu/L0.2 - 4mu/L

26 Aug 16Serum TSH level3.1 mu/L0.2 - 4mu/L

28 Sep 16Serum TSH level3.4 mu/L0.2 - 4mu/L

28 Nov 16Serum TSH level1.2 mu/L0.2 - 4mu/L

13 Jan 17Serum TSH level0.21 mu/L0.2 - 4mu/L

[mrsnlw2016]

bump

[greygoose in reply to mrsnlw2016]

Sorry, you can't bump on this forum, it doesn't work that way.

What you really need to do is to get your FT4 tested. Your doctor should not be dosing by the TSH, because it is very unreliable. Your TSH could be very good, but your FT4 still too low.

If your doctor won't do it, then it would be a good investment in your future health, to get private labs done. You need :

TSH

FT4

FT3

TPOab

TgAB

vit D

vit B12

folate

ferritin

If you get all those done, then you'll have a better idea of where exactly you are.

[mrsnlw2016 in reply to greygoose]

Brill. I have called and gone cap in hand for a message to be passed to my GP about how Im feeling. I asked can I either be referred to an Endo (now 2 years post diagnosis and still no better) or for a full blood screen done. I will note down your suggestions greygoose. I have had many of those done in the past and all appeared ok.

[greygoose in reply to mrsnlw2016]

OK is not the same as optimal. Your doctor will think that anything within the range is fine, but he doesn't have to live with it! If you can post the results, we can tell you exactly how 'ok' they were.

[mrsnlw2016 in reply to greygoose]

Ok. will see what I can find.... uno momento por favor...

[mrsnlw2016 in reply to mrsnlw2016]

01/03/16

Serum vitamin B12311 ng/L211 - 911ng/L

Serum folate13.1 ug/L3 - 14.4ug/L

Plasma parathyroid hormone lev23 Feb 2016

Plasma parathyroid hormone lev3 pmol/L1.48 - 7.63pmol/L

FBC Nov 16

Haemoglobin estimation131 g/L115 - 150g/L

Total white cell count6.5 10*9/L3.5 - 1110*9/L

Platelet count416 10*9/L Abnormal result140 - 40010*9/L

Haematocrit0.39 Ratio0.36 - .46Ratio

Red blood cell (RBC) count4.42 10*12/L3.8 - 510*12/L

Mean corpuscular volume (MCV)87.3 fL80 - 99fL

Mean corpusc. haemoglobin(MCH)29.6 pg27.5 - 32.5pg

Mean corpusc. Hb. conc. (MCHC)339 g/L310 - 350g/L

Neutrophil count3.72 10*9/L1.7 - 810*9/L

Lymphocyte count1.83 10*9/L1 - 410*9/L

Monocyte count0.63 10*9/L0.2 - .810*9/L

Eosinophil count0.24 10*9/L0.04 - .410*9/L

Basophil count0.05 10*9/L0.02 - .110*9/L

Electrolyte serum levels Nov 16

Serum sodium142 mmol/L133 - 146mmol/L

Serum potassium4.7 mmol/L3.5 - 5.3mmol/L

CHLORIDE108 mmol/L95 - 108mmol/L

Serum creatinine66 umol/L48 - 128umol/L

GFR calculated abbreviatd MDRD90 mL/min/1.73m*2 >N/A

Nov 16

HbA1c levl - IFCC standardised34 mmol/mol20 - 42mmol/mol

[Angel_of_the_North in reply to mrsnlw2016]

B12 needs to be over 500, pref 1000 (over range)

Folate is fine

No ferritin result there

No D3

No antibodies

No Ft3

No FT4

You need to get all the tests done as Greygoose suggests

[Hidden in reply to greygoose]

I can only agree with everything Greygoose says. Most doctors are clueless when it comes to thyroid disease and treatment, at least as far as hypoT is concerned. In the 17 years since I was first diagnosed, I have heard downright ignorant remarks from quite a few doctors. I sometimes wonder what would happen if they were equally ignorant about cancer or cardiac disease treatment...

[shaws in reply to Hidden]

Cardiac affects heart only. Cancer, usually one part of the body before it spreads. Both very serious and we know the consequences.

A dysfunction of the Thyroid Gland affects our whole body and we usually all present with different symptoms - Of course they don't know any in the first place so they treat the symptoms if TSH doesn't rise sufficiently. They give us too low a dose of levo when diagnosed to keep the TSH in a range.

Maybe it is because it is 'cheap' to prescribe initially but then the cost builds up as our symptoms are then treated as 'other problems' so medication is given for those which doesn't make us feel any better. Anti-depressants may be the most prescribed as doctor is fed up with patient appearing in surgery 'complaining' so we are labelled hypochondriacs and not much attention given to our disabling symptoms.

Feeling permantly very unwell - no one understands (if not hypo).

Losing jobs. Miscarry etc. Marriage/family breakdowns.

[Hidden in reply to shaws]

I just meant that if heart conditions or cancer were treated as poorly as thyroid conditions many times are, many more people would die from it. We don't (usually) die, just suffer from poor treatment, which is probably why it does not get adequate attention...

[shaws in reply to Hidden]

Yes, I realised that Hidden and do definately agree with you.

[Hidden in reply to shaws]

Also, I somehow suspect that, because thyroid disease seems to be much more common in women than in men, it's easier to dismiss our complaints, and blame it on depression, hysteria, PMS, menopause...you name it.

[shaws in reply to Hidden]

Definitely. They look on us as a bit 'unstable' I think. Which we eventually are if not on enough thyroid hormones.

[UrsaP in reply to Hidden]

Said exactly this earlier today to a friend...! Lots of 'false economies' treating symptoms! Think Dr need a 'researcher' attached to surgery so instead of bloods coming back with 'normal' and then, most annoyingly 'NO further action' being the next step - the researcher could dig to see what other underlying problems the symptoms presenting could indicate. I'm sure in the long run it would save a lot of time and money rather than having people making repeat after repeat visits to Dr, trying to get answers. Obviously the Dr no longer has the time to do this research - they used to...but then they probably had much less strain, many less patients. But it smacks of a vicious circle to me - going in circles and how much of NHS money is wasted with irrelevant medications being prescribed?

[bantam12]

You need to have your T4 and T3 tested to see what those levels are, if your GP won't do them get a finger prick test from Medichecks.

[mrsnlw2016 in reply to bantam12]

I will bear that in mind bantam12.

I dont suppose there's anything that can help me with regards to tiredness right now?

[greygoose in reply to mrsnlw2016]

Sleep?

[mrsnlw2016 in reply to greygoose]

I;m getting 8-9 hours a night And still feel like the living dead!

[greygoose in reply to mrsnlw2016]

I know exactly how you feel. And, as your T3 is probably low, you will probably continue to feel like that until you manage to raise it, I'm afraid. But, make sure you're eating properly! You can't run on an empty tank!

[mrsnlw2016 in reply to greygoose]

I go on holiday soon too

Im eating healthy - no doubt about that. meat veg carbs etc mixed in all meals

[greygoose in reply to mrsnlw2016]

I didn't mean 'healthy', I meant enough. Are you eating enough? People sometimes lose their appetites and don't eat enough to encourage conversion. And, that will make you tired.

[Hidden in reply to mrsnlw2016]

Is there any way you could get your adrenal function tested? Adrenal fatigue is common in hypothyroid people, and can cause debilitating fatigue.

[Hidden in reply to Hidden]

Hidden I'm interested to know a bit about Adrenal problems and suspect that like getting your thyroid checked you have to know exactly what to ask for. Is that the case and what do you ask for?

[Hidden in reply to Hidden]

I am seeing a so called Hertoghe doctor in Belgium and they ask for a complete hormone profile (blood and 24 h urine). Based on those results, they diagnose you with various hormonal deficiencies. I am not sure how much the 24 h urine analysis really matters as that is only used once (between your first and second visit) and, after that, only blood tests are used. The laboratories I know best (in Belgium) measure free cortisol levels in blood at either 8 am, 2 pm or 4.30 pm. Like free Ts, it's important to test free cortisol levels as that measures what is actually available to the body.

The problem with adrenal fatigue is that cortisol levels can still be in range, yet suboptimal, thus making you feel sluggish and causing thyroid hormone replacement to work less well...but many doctors only seem able to diagnose and treat adrenal INSUFFICIENCY which, of course, is a quite different (and much more serious) condition.

In my experience, only a few doctors understand the thyroid-adrenal connection and thus are able to diagnose and adequately treat adrenal fatigue along with hypothyroidism.

[Hidden in reply to Hidden]

Thank you for explaining that. I hope you get the answers you need and treatment. It seems once you are on this pathway there's much more to find out and to fix. I can't now remember the short time ago when I knew nothing about hypoT.

So grateful for the info that gets shared here.

[Hidden in reply to Hidden]

Yes, it's a great forum, isn't it:-)?

[bantam12 in reply to mrsnlw2016]

No quick fixes I'm afraid.

[UrsaP]

I was going to suggest Adrenals might be to blame but see someone already has suggested that. They are very important for Thyroid health.

I've was diagnosed with UAT nearly 26 years ago, 8mths after first child born, but was struggling for years before that, I saw a so called specialist ten years earlier, for about 2 years, being told there was/there wasn't something, before being dismissed 'lack of iodine changing from a girl into a woman...'

About 7 years ago, at my lowest and desperate, and after giving up my job, I saw Dr P. What an amazing Man. Worth every penny. My adrenals were low - and if your adrenals are struggling you have no chance of getting the thyroid sorted. I got the adrenals back up and running, ended up on T3 only, then about 3 years ago I joined a slimming club and 'easily' lost 4 st in 11 months.

Things have slipped this last 12 -18 months, due to lots of family issues causing endless stress. Went back to Dr P last week, for myself and also took my son, also struggling with adrenals. My adrenals low again, hopefully getting back on track with increase to adrenal supplements I take.

However, I do think you need to take advice regarding your adrenals before embarking on any self medication.

All the best

[mrsnlw2016]

Have a GP appointment at 4.40 this afternoon. Last night went to sleep at around 10pm and the alarm woke me at 6.45. Almost 9 hours sleep and I feel like I've barely slept.