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.

Goodness Any. Is there a liquid version of the medication you can use? What symptoms did she have or did they just do bloods?

Lonelybunny, have your symotoms got worse since you were recently tested? (If so, I would try to get retested sooner, if possible, myself.) Do you feel cold every day, or do you have times when you have more bursts if energy, feel warmer, feel anxious rather than depressed and have more hyper symptoms?

Gert, yes I have experienced that. It could be your thyroid had a spurt of action, giving you symptoms of hyperthyroidism. Or, more likely, it could be that your optimum dose is somewhere between 125 and 150 and you need to take 125 most days and an extra 25mcg only now and again. I'd talk to your doctor and see if they can provide 125mcg for you again.

Hello Any, you are the first Mum to post with a baby with congenital hypothyroidism. Please add notes to the thread as you learn more, as it could be a useful resource for others.

Gert
Oui, it is odd. I would tell GP that you felt fine on the 125, but really tired on the 150. Your medication should make you feel healthier than before not worse. Instead of going by the book he should go by how you feel - what your body is telling you.

The first? It's a 1 in 4000 condition so thought there'd be a few of us on Mumsnet.

I'll add what I know when I can ...

I'm not sure how the medication works as the nurses are doing it, but I think it's 1.5 tablets dissolved in water, then squirted in.

It was picked up following the standard 5 day heel prick test, and early treatment indicates entirely normal development, so fingers crossed.

On the thread, Any, not on Mumsnet! I would not presume to speak for the whole site!

Of course - I hope we can attract some!

It's such a scary diagnosis to begin with, but the more I read, the more it's just a simple replacement therapy.

I'll catch up with all your stories when I get a mo. Looking forward to learning more about the thyroid!

hello everyone :)
I have just found this thread and am sooo relieved!!
I was diagnosed with underactive thyroid about 4 weeks ago been put on Levo 25 mg and have another blood test 23rd november to see how things are.
I will get my tsh levels etc when I go back -I had no idea I needed to know them!
I have been off the pill since jan 13 and it was my ovulation test which picked up the thyroid issue as we haven't conceived yet.
Is it worth it to ask to see a specialist ?
Im 38

Thanks digerd and yeghouls. I'm going to give it another week to see how I feel and perhaps let things settled own with the dosage and then I'll go back to the docs. I think you're probably right about finding my balance somewhere in the middle.

lisa it definitely can be a factor in trying to conceive. I had no issues at all (I'm not saying that to be smug, but rather to point out that it might not be the reason). I would perhaps give it another couple of months to see if the treatment helps you. But if the wait to see a specialist is long then perhaps get the process started.

If you do conceive soon make sure they monitor your levels very regularly as you will probably need an increased dose in pregnancy. Good luck!

Flaming Nora. Went to GP this morn with DC and mentioned thyroid questions in passing. Apparently the last GP I saw misread numbers and actually 125 was very slightly too high. She shouldn't have told me to increase. That last appt was for a smear so I was distracted and didn't notice the discrepancy. (Yes, I'm an annoying patient who uses appointments as a chance to get out my shopping list of woes!)

So am back on 125 to see how that goes and will test again in a month.

Thanks for encouraging me to act!!

Hello could someone please help me?
I have unexplained symptoms since giving birth to my fourth baby 20 months ago and I had my blood tested in March due to my symptoms and had only TSH thyroid tested that came back as 2.7. Then I had a repeat test this week that's come back as 1.54. I don't know what's wrong with me and why am I having all these symptoms and they do sound like a thyroid problems but obv I can't diagnose myself . The docs don't really test t3 and t4 if the TSH comes back 'normal' and they said my TSH is normal. Would you say a level of 2.7 dropping to 1.54 in the space of about 7 months 'normal'

I just want an answer to my illness,

Could it be thyroid?

My symptoms
Excessive sweating
Extreme tiredness
Craving sugary salty food
Twitches on the body especially the face
Sensitive eyes
Shivering 'inside' of body
Buzzing/crackling in head
Cycles are now every 37 days instead of every 32 that's they used to be
Foggy head
Increased anxiety feeling
Dizziness/fainting feeling
Gritty eyes with occasional sore eyes
Tingling through body
I would appreciate any help
Thanks

gert so glad you found out you were on the wrong dose!

sammyjayneex some of those symptoms sound like sjorgen's. It is another ayto immune problem, resulting in dry mouth and eyes etc, so the gritty eyes and dry mouth, excessive sweating too I think. Try looking it up on an NHS site and see what you think.

Sammyjay I think you need a full hormone check done, as the shivering feeling, and a lot of the other symptoms, can be a sign of a hormonal issue. Go to your GP and get your bloods done. Good luck. (oh and the drop in your TSH is normal, it changes even with the time of day).

Just popping in to say hello. I was diagnosed with hypothyroidism shortly after DD was born. It hasn't gone away 4 years later, and after changing GPs a few times within the practice eventually found one who prescribed on symptoms rather than reference ranges.

I am currently on 175mcg, and feel vaguely normal. Felt like death on lower doses, despite being within the "normal" range. My current GP says that most patients with hypothyroidism feel best with a TSH of less than 1, and that is true for me.

My hair still falls out in handfuls, I have a shockingly bad memory and find it hard to shift excess weight, but I no longer fall asleep as soon as I sit down, so that's progress!

Welcome Anne, that's interesting, I'll be looking at my test results with renewed interest, knowing that some GPs look for TSH under 1.

Im sorry to hear your memory is still bad. I seem to have a little improvement most days but still get times of forgetfulness (even when feeling fine otherwise). It is the most embarassing symptom and i find it hard when it affects others.

People with hair loss, and with bald patches have a connected auto immune disease called alopecia areata. There is no known cure, but various treatments seem to have had some effect for some people. I came across a good website with a useful page about treatments:

alopecia online

Hi all, just noticed this thread and would like to say hi. Was dx in 1998 aged 21 and have been on 2-300ugs daily since then. Had a healthy pregnancy in 2001/2 and until recently was managing ok.
Now have pernicious anaemia dx and undergoing tests for enlarged spleen and poss coeliac (all of which can be related to thyroid disease)
If I can help anyone then just ask! I'm sure I will need some hand holding, as have the Consultant for my biopsy results tomorrow :'(

Hello, had my diagnosis of hypothyroidism yesterday and trying to get my head around it. My TSH was 7.9 Free T4 was 10.9 and I had raised Prolactin - in the 700's. I was tested because my periods have never returned after stopping breastfeeding earlier in the year.

I have a starting dose of 25 daily - that seems quite low? And I need to repeat my blood tests in February. My Dr says I am borderline Hypothroid but I've been doing some reading that says a TSh of under 2 is preferable to TTC. We had lots of fertility issues for my first child and am slightly gutted that yet another potential problem has been thrown into the mix!

Hello Barbies, yes it's low and would expect your GP to raise the dose a bit at a time. Give it a few weeks. You could rry seening a different doctor at the same practice next time.

Hi cls, such a lot to deal with. Hope things go well tomorrow.

I'm always cold sometimes so cold I feel like it's in my bones yet everyone else is like ,what ? It's not that cold ! I'm tired , hair still falling in clumps , depressed and had another panic attack today, I really can't loose weight since I had my first child so I think it may be linked to that , I gain say 3lbs then loose 3 then gain 4, then loose 4 I can't get more then that off yet I eat hardly anything really and have two bet active jobs and 3 kids to run round after. I'm so fed up but never been someone to speak up so to say and how on earth can I get a GP to give me something to help ? If they feel I should keep retesting bla bla bla I'm stuck

hello all.

I was diagnosed with hashimoto thyroiditis last year saw a endocrinologist who sent me back to gp with instructions to medicate me only when my tsh gets to 10.

is this right? ive so many symptoms and waiting to see a rheumatologist also as not all symptoms fit with thyroid

any advice will be greatly appreciated.

LonelyBunny, The panic attacks & anxiety sound like hyper; the cold and depression and no weight loss sound like hypo. At one stage when I was like that I went to the GP thinking I was bipolar. (He laughed at me ) Is there any way you could go to see someone privately, there might be things a private doctor can try that an NHS one can't (as others on this thread have been saying).

hashtag it doesn't sound right , but we can't be sure. A doctor would say the '10' on its own could be the same as a '5' somewhere else or an '8' at another test centre. So one sample, being tested by different labs, could have a different result number, but still be equally either below/optimum or above in relation to the local test range. I'm beginning to wonder whether it's worth making up a map of what the different test ranges are around the country. A doctor said (when I asked) she thought that the Birmingham test centre had a different range, and it went up to 10, but if I'd had my blood tested there, I'd still be above that and receiving the same treatment, iyswim.

Do you know anyone else with thyroid disorders locally, who you could ask about their blood results and see which doctors/endo they have? I would be tempted to make plans to change doctors, I think. I'd speak to you GP and ask them to their face why they are not treating you, and what they will do about your symptoms. It's the symptoms that they seem to be doing nothing about. Even an explanation of why they are not giving you medication would be an improvement on nothing. It is worrying that so many people are left.