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[Peacegirl]

Hi,
Felt so, so ill (exhausted, aching, mouth ulcers whch won't heal, brain fog, extreme itching (I could go on but I wont   ) I couldnt get a GP appointment for over a month so had some blood tests done privately and the antibody results have me worried:

TOTAL THYROXINE(T4) 107 nmol/L 59 - 154
THYROID STIMULATING HORMONE 3.45 mIU/L 0.27 - 4.2
FREE THYROXINE 13.7 pmol/l 12.0 - 22.0
FREE T3 4.3 pmol/L 3.1 - 6.8
Thyroid peroxidase ab's * 67.9 IU/ml 0 - 34
Thyroglobulin Antibody * 616.0 IU/mL 0 - 115

Any reassurance gratefully recieved - my mum died at my age from Myelodyspalstic syndrome and although it's not hereditary. I hope you can see why I'm worried. Also, where do I go from here?

[Katejo]

Hi,
Felt so, so ill (exhausted, aching, mouth ulcers whch won't heal, brain fog, extreme itching (I could go on but I wont   ) I couldnt get a GP appointment for over a month so had some blood tests done privately and the antibody results have me worried:

TOTAL THYROXINE(T4) 107 nmol/L 59 - 154
THYROID STIMULATING HORMONE 3.45 mIU/L 0.27 - 4.2
FREE THYROXINE 13.7 pmol/l 12.0 - 22.0
FREE T3 4.3 pmol/L 3.1 - 6.8
Thyroid peroxidase ab's * 67.9 IU/ml 0 - 34
Thyroglobulin Antibody * 616.0 IU/mL 0 - 115

Any reassurance gratefully recieved - my mum died at my age from Myelodyspalstic syndrome and although it's not hereditary. I hope you can see why I'm worried. Also, where do I go from here?

Have you managed to.bookl a GP appt to discuss it yet? I can't advise you on this but I know. How it feels to worry about a parent's past illness. I am the age that my Mum was when she developed multiple myeloma and have had blood tests as a precaution this year.

[Peacegirl]

Hi,
Sorry to hear that about your mum, hope your tests were ok?

I'm going to the walk in session tomorrow

 

[CLKD]

You could visit a Pharmacist too.  If you paid for the results you should be able to ring and get an explanation at no extra cost.

Let us know?

I have anti-bodies as I had German measles.  Have no idea when  - suspect it was when we were diagnosed with 'strawberry' rash one Summer 

[Wrensong]

Hi Peacegirl.  I agree with Stella - your raised antibodies may indicate an autoimmune thyroid condition such as Hashimoto's which is usually well managed on Thyroxine.  Your free Thyroxine is towards the bottom of the ref range & your TSH towards the top, suggesting as Stella says, you may benefit from a low dose of replacement Thyroxine, but your GP may not feel this necessary while your results are still within the normal range.  I would make sure he/she knows how you are feeling physically & mentally as this may determine what's decided about treatment. 

Your T3 is not bad & shows your body is converting the Thyroxine it makes into the form the body can use.  As you are exhausted & achy with brain fog it is possible all that's related to the thyroid situation.  But vague symptoms can come for so many other reasons, especially at this stage in our lives. 

A tendency to recurrent mouth ulcers can come with autoimmune conditions, but if your GP thinks you need thyroid treatment at this stage this should mean you feel less run down & hopefully will get ulcers less often.  I feel for you - they can be so painful & make eating & brushing very uncomfortable indeed.  If you don't already use a mouthwash after brushing this may help them heal quicker.  I use Plax last thing at night when I get mouth ulcers & it tends to shorten the duration of an episode by a few days.  Corsodyl is recommended by dentists but I find the flavour unpleasant & it can stain teeth.

Please don't worry about the thyroid antibody results - knowing what's going on can really only be a good thing, possibly explaining why you have been feeling poorly & indicating the way ahead to help you get better.  I hope you get on well with your GP.  Do let us know how you are.

[Paupau]

Hi Peacegirl,

I would like to suggest you get your Vit B12 level checked out as a low level can result in your symptoms. I know because I had some of them and more, wasn't sure if it was peri so asked for it to be checked and it was low. since being on b12 injections my symptoms have improved or gone. now I put them done to peri.
ask for your ferritin and folate levels too as b12 needs them to work best. also check your vit d levels as that can cause fatigue.

when i started feeling like you , I didn't want the doc to assume it was my age and due to peri so I did a bit of googling and then went and asked for the tests, fortunately i got a young woman doc and it was she who mentioned the menopause matters website.

[Katejo]

Hi,
Sorry to hear that about your mum, hope your tests were ok?

I'm going to the walk in session tomorrow

 

Yes mine were ok. Good luck for tomorrow.

[Peacegirl]

Really appreciate all the replies. My (new) doctor was ok in some ways i.e. she said ‘lets not get fixated on the anti-bodies indicating thyroid until we've ruled out other possible causes'. She wasnt happy with the private blood test. I.e she kept saying ‘if youd come straight here' even though i told her id been ill for months and was mid-change of gps so it would have been another 6 weeks. She also wasnt happy id used the walk-in appointment as she said it was routine. Anyway i have to put all that aside for now. So i have another blood test next friday and another apt with her on june 4th which feels like an awful long way away given how rough i feel.

Thanks for the help 💕

[Wrensong]

Well, good GP is taking a thorough approach with more bloods, but not so good she didn't seem so understanding about the private testing given how rough you've felt.  If the next bloods don't show up anything else to throw light on symptoms & she doesn't want to treat the possible thyroid condition at this stage (you may not need meds with bloods still in the ref range) I would make sure they retest your antibodies & thyroid function in a few months.  I hope you manage to get to the bottom of it sooner rather than later though.
Wx

[Wrensong]

Same here Stellajane.  Surgeon I was seeing for other reasons noticed my throat, scanned it there & then, did a needle biopsy & asked how long I'd had a goitre.  I was gobsmacked - had seen my GP only weeks before asking him whether classic symptoms could be due to hypothyroidism & he'd laughed me out of the surgery.  By that time I'd left my job, too unwell to continue.  No-one (including me) had noticed my thyroid was enlarged & I'm very skinny so it should have been obvious.  Surgeon did bloods which showed sky high antibodies  & started me on just 25mcg Thyroxine immediately.  Told me I was very lucky he'd noticed it.  5 months later it was being carved up for histology!  Luckily benign - but because it looked like a single nodule they wanted it out.  Turned out to be multinodular, but that wasn't evident pre-op.  Was put on 100mcg Thyroxine by the (general) surgeon post-op, who discharged me saying "I'd be right as rain".  Years before I got to see an Endo, as T4 alone isn't sufficient for me. 

Peacegirl if you are reading - please don't be alarmed by the mention of surgery - this would not have been necessary had the lump not appeared suspicious & many thyroid patients don't need surgery at all.  Most also do very well on Thyroxine alone & feel very much better for it given time.

[Katejo]

Same here Stellajane.  Surgeon I was seeing for other reasons noticed my throat, scanned it there & then, did a needle biopsy & asked how long I'd had a goitre.  I was gobsmacked - had seen my GP only weeks before asking him whether classic symptoms could be due to hypothyroidism & he'd laughed me out of the surgery.  By that time I'd left my job, too unwell to continue.  No-one (including me) had noticed my thyroid was enlarged & I'm very skinny so it should have been obvious.  Surgeon did bloods which showed antibodies in the thousands & started me on just 25mcg Thyroxine immediately.  Told me I was very lucky he'd noticed it.  5 months later it was being carved up for histology!  Luckily benign - but because it looked like a single nodule they wanted it out.  Turned out to be multinodular, but that wasn't evident pre-op.  Was put on 100mcg Thyroxine by the (general) surgeon post-op, who discharged me saying "I'd be right as rain".  Years before I got to see an Endo, as T4 alone isn't sufficient for me. 

Peacegirl if you are reading - please don't be alarmed by the mention of surgery - this would not have been necessary had the lump not appeared suspicious & many thyroid patients don't need surgery at all.  Most also do very well on Thyroxine alone & feel very much better for it given time.

  I was born with interactive thyroid and much later developed a goitre and had surgery to remove it in 2005. Glad that I did. Before the surgery I had years of recurrent throat and ches infections but this stopped after the surgery.A doctor denied any connection but I am pretty sure that they were linked. The operation went ok. It can affect your voice a bit. My brother had the same op and his voice was worse affected but his goitre was huge .

[Wrensong]

Katejo - I did lose my voice for a few weeks after surgery, but it came back just the same eventually.  Have always been lucky never to suffer with throat infections or chest probs except with a cold, but seems likely that your throat infections at least could have been a consequence of the goitre - the interference with swallowing & drainage of saliva must make undesirable bugs hang around & infection more likely.

[Wrensong]

Sorry to hear that Stellajane.  I know hair loss can be related to hypothroidism & a friend's mother who was hypo was very badly afflicted that way.  I was lucky to have always had thick hair though didn't think so, it as it made it difficult to style, but it's thinned considerably in the menopause years & that's scarily evident at the temples, but hidden by my usual style.  Is the itching related to dry skin & have you found ways of managing it?

[Wrensong]

Sounds like a great strategy to me.  I'm glad there's something that helps.

[Peacegirl]

Mine wasn't as bad as that - goitre was never mentioned, but it was definitely more visible than most people's. I think it was pure luck that I got spotted early on. Mind you being on thyroxine hasn't sorted out the health problems I was hoping it would - ie hairloss and itching!!  It did alleviate the tiredness that used to drag me down though.

Oh god-the dreaded itching! And the hairloss-someone put me onto a hair extension web site and i have a nice clip-in for special occasions-its so natural. So I asked at the gp about goitre so she had a feel but I think i can see my thyroid But i could just be projecting. 😳Do you happen to know from your personal research if you can have high antibody readings that can lower on their own and without there being a particular cause? I.e my immune system git a bit low because i had so many colds this year but it may pick up? I've been having a good read around and there's way too much info out there!