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Underactive thyroid? TSH high, they want me to wait 6 months to retest!

(15 Posts)
Pat1ence Wed 04-Feb-15 15:40:12

Hi ladies. Bit of a complex one.

Have just received a letter from my infertility doc who has just done full bloods with a view to do IVF in the coming months (treated endo, all else seems well, not really sure why suffering from secondary infertility). Have felt rotten for a while now, thinking it was my iron levels I asked him to check and due to every female on both sides of my family having thyroid dysfunction I asked for that too.

The letter says my TSH is elevated and explains what this could mean. He has also emphasised that this wouldn't be causing my constant tiredness but I disagree. I don't feel right. For months I've felt exhausted. I put it down to the endo maybe returning but I have other symptoms:
- my hair is brittle and breaking, the new growth is wiry and awful! It's thinning at the front.
- My nails are brittle
- my skin is drying out and I have spots.
- cold hands/feet constantly. I'm always cold!
- pain in my joints and more recently, muscle aches. Eg. Brushing my DSs teeth- my arm starts to ache, doing my hair- my hands and arms will ache.
- my memory is beyond useless. I used to be organised, now I can't remember anything.
- exhaustion. More than just needing sleep, I try and do things then have to sit down for a rest. It's like I'm wiped out.
- palpitations. Have had ECGs in the past, always normal. Palpitations continue.
- joint pain. Usually knees/hip/back
- heavy, horrible, long periods. Could be endo? Inc spotting before and after.

There's probably more but my I can't remember! I put it down to endo, being a carer, being stressed, potential infertility depression... But this feels like a eureka moment for me.

I don't know exact numbers so not sure how high TSH is but the letter says T4 is within range. Well it will be if my body is trying to stabilise it!

I can't do IVF knowing that there could be a problem. I didn't want to wait another six months for a retest.
Please help! I have a GP apt next week, what do I say? Do I demand another test? Medication? There's a big family history of disastrous thyroids, I'm only early 30s but I honestly think I'm on the slippery slope and don't want fobbing off.

RockinD Wed 04-Feb-15 16:25:21

cks.nice.org.uk/hypothyroidism#!scenario:3

Find out exactly how high is high and then hit your doc with the nice guidelines, which say quite clearly that TSH should be under 2 if TTC or pregnant.

FT4 may well be within range, but it is probably not optimal if TSH is high.

Take no sh*t on this.

Pat1ence Wed 04-Feb-15 16:40:11

Thanks Rockin, very helpful. I think my fertility consultant is irresponsible after reading that. I'm not doing IVF without sorting this out, it's too risky in my opinion. I didn't want to prolong it by another 6 months either. I want a thyroxine trial, asap.

SirVixofVixHall Wed 04-Feb-15 16:49:39

Your symptoms are pretty much what mine were before being diagnosed with Hashimoto's. I get so angry reading stuff like this, my TSH was 8 when pregnant and the GP still didn't medicate, he said it was fine! I have a real worry that it might have damaged dd in some way, is that possible/likely? Does anyone know?
My palpitations, raised liver enzymes, thinning hair, all these were and are still dismissed as not connected with thyroid function, but I can pretty much plot what is going on with my thyroid by my palpitations, even though my GP insists you only get them with hyper not hypo. GRRRRR. If your TSH is high and you have all these symptoms you need medicating, have they tested you for antibodies?

Pat1ence Thu 05-Feb-15 09:21:11

SirVix I don't think they tested for antibodies but I will ask for the test next week at the GP.

My consultants secretary is off until Monday so I can't find out any of my numbers. Annoying.

I have spoken to family members, paternal grandmother had under active at 23years, was very unwell. This became underactive around 40years. She had secondary infertility.

Everybody else (mother, aunties, maternal grandmother) have under active.

Pat1ence Thu 05-Feb-15 09:22:02

Sorry, that should read it was overactive and then burnt out and went under.

SirVixofVixHall Thu 05-Feb-15 15:30:58

Very common with hashimoto's (the auto immune type) for it to go hyper and then into hypo. Mine just went hypo though.

Pat1ence Fri 06-Feb-15 12:49:04

I've hunted down my results-

TSH 10.6
Ft4 10.6

Not exactly great for IVF are they. I'm very symptomatic. I've completely changed as a person in the past few months. I thought I was depressed, this changes everything.

RockinD Fri 06-Feb-15 12:52:38

Even without the reference ranges I can see that you are very hypothyroid and with a TSH above 10 you should be treated anyway, even by the most conservative of doctors.

Go back with the NICE Guidelines and bang the table. I would venture to suggest that to do IVF with results like that is to set yourself up for disappointment and to get your thyroid fixed may mean you don't need it!

Pat1ence Fri 06-Feb-15 13:12:45

Agreed. I wouldn't even consider IVF under these circumstances. It'd be like sealing an embryo's fate sad even if by some miracle it worked, there's a huge risk of miscarriage, pre-term delivery or growth/brain issues. It's my fertility consultant that sent this letter (with the 6month retest) He's fully aware of our IVF starting within the next few weeks, why has he not called a halt to it?? Or do you think he's waiting until our next apt?

Anyway, GP next week to ask for antibody test and beg treatment. I'm desperate. Infertility aside, I feel bloody awful. Can't go on like this. Was inconsolable earlier (not normal for me) and very close to making an emergency apt for today.

Thank you Rockin I will update when I've been.

SirVixofVixHall Fri 06-Feb-15 13:26:13

Bloody hell with those results you should be medicated, no question. I agree with the pp who says if the thyroid issues are addressed you may not need IVF anyway. I feel dire if my TSH creeps up beyind 3, so you must be feeling ghastly. No way can you embark on treatment in this state, are they mad?
If you want some private advice then I saw Marion Gluck at the Marion Gluck clinic in London, who covers all sorts of hormonal issues.

Pat1ence Fri 06-Feb-15 13:45:04

London is a few hundred miles away SirVix, but will look up Marion Gluck Clinic for future reference. If love to know what my levels were at me last thyroid check. It was years ago now. I have Endometriosis and at this point don't know where the Endo ends and the thyroid begins. I have red/brown bleeding in the week leading up to my periods. Begins with cramps. A hysteroscopy suggested it was coming from an ectropian so that was treated two months ago. Treatment failed I presume as the bleeding has started again. Could that be linked to my thyroid? It has been happening for 3 years now though, has got worse lately. Who knows. I just can wait to get to the drs!

SirVixofVixHall Fri 06-Feb-15 14:07:20

Few hundred miles away from me too, but I was getting told my results were normal by my GP at the time, while feeling grotty, and in the end I was happy to pay for some advice. You could also ask your GP for a referral to a private endocrinologist. In your case as you don't want to waste any more time I would think about having at least one private consult, as clearly the advice you are being given right now is terrible. What area are you in? Maybe another mumsnetter will know of a really good person to see.

SirVixofVixHall Fri 06-Feb-15 14:08:31

Thyroid problems can cause all sorts of hormonal and gynae issues, basically your whole hormonal system goes awry.

Pat1ence Fri 13-Feb-15 15:16:09

The Dr wasn't very nice. She only agreed to retest me sooner (mid-March) because I burst into tears when she sternly asked "do you want to be on lifelong medication" while handing her my two pages of symptoms.

I also got my results from two years ago when I went to them with symptoms. My TSH was 3.54 and FT4 12.6. They told me it was normal, how I wish I knew then what I know now! I think that should have flagged up as an issue because they knew I was TTC so it needed to be under 2. I'm completely exasperated. feel let down, miserable and ill.

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