Support thread for those with thyroid related disorders

[yeghoulsandlittledevils]

This is a support thread for anyone who would like to ask any general questions about thyroid function or life with thyroid conditions (especially if you don't want to start a new thread) and also for any Mumsnetters who have been diagnosed with thyroid disorders (hypothyroidism, hyperthyroidism, Hashimotos and related conditions) to chat and support one another. Please come and be part of the growing Mumsnet thyroid support network.

Hi everyone, I was convinced I had an underactive thyroid and went for test on May. I was putting on weight, very fatigued and my hair was thinning at an alarming rate They were normal but my dr sent me to a rheumatologist as she thought I might have fibromyalgia.

Upshot is I was tested for Lupus, I'll get my results in a couple of weeks. The consultant looked at the blood tests from my gp and agreed the thyroid was normal.

My question is (eventually!) if I do have Lupus could this affect my thyroid and the thyroid test still be normal, because Lupus is an auto immune disease?

Fibromyalgia is a symptom, not a diagnosis, and very often the cause of that symptom is a problem on the thyroid/adrenal axis.

After my own experiences, I would always be very wary of anyone who told me that a blood test result was 'normal'. I was told that so many times on my road to [almost] recovery, until I got wise to it.

The question should be, is my test result optimal? I was told by a consultant that he was not required to exercise any professional judgement in deciding whether someone had a thyroid problem or not. He told me that the lab would give him a number and a range and if the number was within the range, then there was not an issue. This is blatant nonsense.

If your TSH was over 2 and your FT4(if done) below the top third of the reference range, then you are potentially hypothyroid and require further investigation.

Yes, there is a tie up between lupus and auto immune thyroid disease and quite a lot of people have both, but I could not say whether one influences the other.

Thanks, I had new blood tests done at the appointment with the rheumatologist so will see what the thyroid one is then.
I think I might get a diagnosis of Lupus, I have a few symptoms, some of which are very similar to UA thyroid.

Thank you Yeg!
I have to say that I find it entirely confusing. I ought to have been more proactive - investigating further despite meds. being dolled out. Since I was pregnant, had a toddler and a job, I did go for a private appointment (at which I was told that my levels didn't warrant any change in dosage). I felt ignorant and a nag. I remember talking to the BTA who told me to eat a banana a day. To be honest, they might've said more - but that's the only thing I could understand. I got print outs from the doc but couldn't make head nor tail of it, so accepted what was told to me. For all I know, they're as right now as they ever were. But I felt crap.

Rockin Who was it that organised the conference you went to? Was it an organisation, and if so is there a link to the their website and future events?

I think both positive and negative experiences each individual has had are important parts of the narratives. Sharing negative experiences of treatment or symptoms will, I hope, over time lead to some of us comparing notes and getting answers, as well as providing somewhere to share improvements or setbacks. It is because the symptoms can so often seem trivial and minor to others that we could do with this support thread.

Personally I wouldn't dream of bothering a GP with most of my symptoms, they just don't have the time. I think there have been quite a few of us who have been trying to weigh up what is most important to mention in a 2 minute GP appointment.

The organisation that ran the conference is called Thyroid Patient Advocacy. Their website is down at the moment (horrendous IT problems - nothing sinister) but when they are operating at full tilt they have a very good forum and lots of information. They run the conference every year, alternating between Birmingham and Yorkshire.

I find the greatest use of events like that, and the Thyroid UK support group I go to, is that you can mention a weird symptom and everybody nods instead of giving you the old .

I bother my GP as little as possible, partly because I think in his heart he still believes I have CFS and partly because I manage my symptoms day to day and there's nothing else he can offer.

RockinD I second they are a good forum but it has been frustrating to lose their website but hopefully soon up again as many are very very knowledgeable about thyroid issues. I didn't realise it was a yearly conference thats interesting to note, one of the guest speakers I am hoping fingers crossed to see soon. My GP also I am sure thinks I have CFS/ME too and he wrote that in my Endo referral letter, the Endo said your GP says he thinks you have CFS but you are not willing to accept it, I said that's correct so he tested me for antibodies the result came back with high thyroid antibodies so I was right to push for a different diagnosis and that was thanks to advice from someone on TPA. I will always be thankful to them for passing on advice any support like this one is great for learning more about this condition.

bump so this doesn't get forgotten.

Had routine GP appointment and booked for repeat blood tests (CRP, FBC, FER, FT3, FT4, TPO, TSH). Should have a referral for NHS counselling which I didn't think was possible, so I am glad I mentioned it. I wish there were some test to see whwther there is some ither physical reason for my low emotions (seratonin deficiency - is that evwn possible?) Whenever there has been a need for me to withstand stress because I'm under pressure, I resort to counselling, but now I am thinking there could be something else.

I,ve had tft done a fair few times over the years and have always been told all is within normal range. however my thyroid gland is pretty large so much so that people often ask me about it. I've been told it is asymptomatic goitre. any one had this experience or should I keep going back to the gp for tests?

hi. I have my latest blood test resukts back and was wondering if anyone can help me interpret them?

It says ultrasensitive hTSH of 0.10 and free T4 of 24.4.

I was on 175mg of thyroxine but on the basis of these results have been put back to a dose I used to be on of 150 mg per day. I was feeling a bit wired on 175mg and fairly restless so I'm not sorry to see the dose reduced if that was the cause of it but I am trying to get my head around the results and how to read them

thanks for any help!

The same thing has just happened to me. I was on 150 mcg and was put down to 100 mcg a week ago.
Your TSH is low and T4 is high so to bring you back to a more normal state, you need your thyroxine reduced. You've effectively become temporarily "hyperthyroid".
I also felt wired, but feel calmer now I'm taking less thyroxine.

thats what was confusing me - it seemed that as I was reading them They were saying the opposite of one another. You'd think after 8 years of this I would have figured it out but tbh I rarely looked at the results as the medication had me feeling so much better. this time it didn't so I had a closer look.

thanks

I'm trying to think how to explain it. The T4 is your thyroid hormone. Your result is too high so you need to take less. Because it's high, your thyroid stimulating hormone has dropped low. They just need to be in a better balance.
I have to go back for another blood test in January ( three months time) to check that my change of dosage is having the desired effect.

thanks! hope your blood test shows a better balance. I have a retest in jan too but I should be feeling better I hope on the lower dose.

Good morning everyone, just a little update. not feeling great at all, now on 100mg levothyroxine no change so far.
Spoke to my surgery today as had bloods done Tuesday, fbc isn't right and I need to see the doc tomorrow to discuss the results, any idea what this could mean?

last night I couldn't get up to bed (we have a town house) started up the first flight of stairs, became very breathless and dizzy and my heart felt like it was coming through my chest, I sat on the stair waited for it to calm down and decided it was a better idea to sleep on the sofa.
about 5 months ago I used to be at the gym 3 times a week minimum

amanda
That is similar to me when my thyroid was hyper. But I had lost loads of weight despite being ravenous and never stopping eating.

Try to take your pulse in your wrist or neck - mine was 160 sitting still. Dread to think what it was trying to climb the stairs.
I was not taking Thyroxine, it was my Thyroid producing far too much for whatever reason. .

Apologies for posting and running, RL got in the way big time!

rockin, I don't know my current levels, I have good trust with my GP and he has been adjusting them regularly, so I hold a degree of confidence that I'm in the right place now at 100mgs.

I cannot agree with what you say about fibro being a symptom - it is an accepted condition and not always concomitant with tyroid disorders, i.e. an underactive tyroid may cause fibromyalgia, but not all cases of fibromyalgia are caused by an underactive thyroid.

hattie, fibromyalgia causes muscular pain, fatigue and can also extend to depression and IBS. The muscular pain symptoms are in particular points, called tender points - your GP would be able to test you on these if you have concerns. This provides a link to the NHS pages on the condition.

I find I am very sensitive to cold - I experience it as pain. My skin is also very sensitive, a gentle touch can be painful and the idea of a massage would have me screaming.

I'll try to post again later, must go back to work!

amanda the only scrap of hope I can offer is that the thyroid tablets can take a few weeks to show any effect. It sounds like there might be something else going on, though. The blood results will hopefully show what that is, anaemia is one possibility. Good luck with your appointment!

Thank you for your responses, have had a call from the hospital and I have an appt with an endocrinologist 19/11 and hopefully tomorrow the doc can explain the blood results.
I definitely think there is more going on than just the hypothyroidism, lots of people I have spoken to have additional conditions that go alongside it. trying not to google as that can be very depressing.
Take care and have a happy Halloween x

You'll have to see what the doc says about the FBC (full blood count). Could be like me, a bit anaemic, which commonly goes with hashimotos and also takes a long time to respond to corrective medicine.

the way you sound now does sound very much the way I felt on 100mcg of thyroxine and I was hyperthyroid 7 just needed to bring it down a bit, I think. I took it down to 75mcg then 50mcg which was ok for a while, but was probably too low and so after a while I was suffering again, with depression and feeling cold/slow. So am now trying out 75mcg and feel much better again on that. Perhaps you could phone the surgery and ask for a call back and see if a doctor would try you on 75 mcg, for a bit. If 75 isn't enough every day, as others have said, you can end up taking 75 one day and 100 another, or other combinations to get a good overall level. I have a feeling my level will be between 50 and 75.

link to your original thread

can anyone help on this thread, about cysts on Thyroid?

Can I join please ? I was tested
For thyroid 7 years ago it came back boderline retreated 2 months after that cane back normal. Now I went to GP as my hair been falling out , I'm also cold a lot and had bad depression / anxiety , it came back boderline again it's being retested in dec. I also have probs with my weight I'm stuck at 14 stone despite eating one meal a day and being very active . Bit weird

Hi. Can I join too please and ask a question?

I have Hashimotos, diagnosed during first pregnancy 6 years ago.

I've just had to increase my dose from 125 to 150 a day. Otherwise I was on 100 since birth of second child 3 years ago with blood tests every 6 months. When I went up to 125 a few months ago I felt brilliant. I was actually surprised we had to increase it again. But this week since going up to 150 I have felt shocking. Sooooo tired. Has anyone else experienced this? It's a bit odd, non?

Hi all,

Just checking in at the end of a long night feed. DD was diagnosed yesterday with suspected congenital hypothyroidism - she is 9 days old. We have a lot to learn! We've started medication and hope to have caught it before any adverse effects.

Ill read through all the posts during our next feed but didn't want to lose such an interesting thread!