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.

delasi glad that you have had some sense from a GP! Hurrah! :) Thinking of you this week, hope returning to work is manageable and you can put off other things while you make the necessary adjustments. Look after yourself! Valentines day on Friday should mean you get a well deserved pampering all next weekend, surely?!

Sorry, have really lost track of this thread the last couple of weeks as life (and bereavement) has taken its toll.

Welcome newcomers and hope you have success getting answers and treatment from your doctors/specialists. Let us know how you get on.

yegods and Barbie thank you, I'll be discussing increasing my levo along with other things, see how that goes. But my energy levels have increased, which coincides with going low gluten again, so I'll be keeping this up now. First day at work today, went well, the odd sore point but generally okay so happy about that

yegods I hope you are doing ok and have lots of support right now

Barbie Fantastic! Keep us posted!

I have received a copy of the referral letter and my TSH levels are "fully suppressed."

Can anyone tell me more about this?

Someone more knowledeable might be able to shed more light, but I think you'll need to talk to the endo, snuffle to be sure, as that could mean it is a thyroid or another organ which affects the thyroid. Either way it sounds as though it is getting the attention you need, so hope it leads to optimum treatment for you. Keep us posted!

Reading between the lines of your posts, it may be rhat tesrs have picked up that your pituitary is giving a false positive on your thyroid function, and to look into it being a pituitary issue, but this is sheer guesswork based on information on the internet about the endocrine system. It's a good idea to look at what the various parts of the endocrine system do, and try to think about what your endocrinologist is likely to want to talk about so that you can better understand what they say (imo) but on the other hand, they might then think you already know all you need to know and don't bother explaining some basics!

Back again!

I now seem to have my period or starts of one so not pregnant.

However still feel light headed and am peeing more. Some threads say this is a side effect some say it's to do with adrenal gland (connected to thyroid?) and some say UTI. Don't think it's UTI.

The excessive peeing is embarrassing no way do I want to buy Tena Lady Pads! and how strange it's happened since I'm on bloody levothyroxine.

some people say you should drink more water and it's sign of metabolism speeding up but so far I've had accidents 3 times and had to buy spare knickers/leggings.

any ideas?

Fell off TIO, back later.

Fell off TIO, back later.

Anyone have wrinkly fingertips just like after a bath, in fact dehydrated skin on face as well.
I am on 100mg of levo, weight steady, everything else ok.

I found my skin was very dehydrated when hypo, zanzibar, but also I wasn't drinking enough.

Sorry HelloBoys, I get that a little at various times of month, so i suppose it must have some hormonal connection, but am not sure what it's related to exactly or which organs (adrenal??) regulate it.

Hi there I initially posted here in mid jan, following initial late diagnosis of hypothyroidism and being started on 100mcg levothyroxine. Have been back for the first set of 6 week blood tests. My scores on the doors are now as follows:

TSH 11.1 (was 84)
t4. 14.9 ( was 5.6)
serum free triodothyroidine 4.0 (was 4.9 when last tested in 2010)

The practice nurse was very helpful, rang me up with the results and has requested that my levo dose be raised to 125mcg. I will be seeing the doctor again on Monday afternoon (10th).

My experience thus far with GP has not been great given he had not diagnosed thyroid issues (referred to in previous post) any tips on what I might ask the GP about these results, such as whether I can be referred to an endo, have I got hashimotos etc would be most welcome!
Thanks this thread has provided great support and info.

barbiesbeaver - you are not properly medicated at all! i would not put up with that slack attitude from my gp (am stroppy ) and would be insisting on an increase in meds. did you start off as sub-clinical and this is just a trial? i just increased my meds myself then went back and asked for a blood test but as i said, i am stroppy!

just popped on this thread to mentiom
n my success with 5:2 dieting. i have lost most of the weight that crept on since diagnosis and feel really healthy on it. i had worried how it would go with the whole underactive thyroid thing but it is going really well. just thought i would mention it.

oh weird! the last message when i opened the thread was barbies, but i see things have moved on . . .

nudge

Moving this thread up for anyone else who is interested.

I have just found out I have an under active thyroid. I can't remember the levels. I started taking 100mcg of thyroxine 2 days ago. I understand it will take about a month to feel better but I feel worse much worse. Is it thyroxine?

My mum has a copy of the "your thyroid problems solved" book which has a diet to follow along side taking medications so will start on that next week. From memory it's no gluten no dairy diet not sure what else. Has that sort of thing helped anyone else.

I was feeling pleased about getting diagnosed as I have put on maybe 15 kilos since november and it keeps going up even when dieting, but now I;m feeling abit freaked put worrying about things like TTC (we are currently), then having a high risk pregnancy/birth, then breastfeeding.

I've skimmed the thread but will go back over it because there looks like loads of useful stuff.

Welcome to our world! Loads of useful info on this thread.

Always a good idea to get a copy of your test results, with the reference ranges, so you can keep an eye on what is going on and where in range you are. Never accept being told that test results are normal. So often that means that they are simply within the reference range, and normal is not the same as optimal not at all.

You may feel worse before you feel better, but give it the statutory six weeks and re-assess then. Sometimes the body doesnt quite know what to do with a sudden influx of thyroxine if its been short for some time, but things should level out over time.

If you have positive TPO or TgAB antibodies, your hypothyroidism is auto-immune, in which case you should go gluten free. Again, the weight should level out over time. Ive been on thyroxine since June last year and so far have lost 21lbs of the 42 I put on before treatment, without making too much of an effort.

Once you are adequately and optimally treated, pregnancy, birth and feeding should be straightforward. However, management of women with hypothyroidism during pregnancy does require specialist supervision and this is one of the reasons you need to keep an eye on your figures. If you are TTC you need to keep your TSH below 2. Here are the NICE Guidelines you may need to talk to your GP about these at some point.

cks.nice.org.uk/hypothyroidism#!scenariorecommendation:7

I'll get a print out next time.

GP I think is pretty good. I first tested in january and the levels were just outside of range but no antibodies being shown. So we retested last week. levels rising and now have antiboidies showing. He mentioned that he could have perscribed in january but wanted to wait to make sure what was happening. I wonder if he was seeing if it was pregnancy related as I had a miscarriage in November and was waiting to see if levels sorted themselves out.

Good to hear that it normal to feel rubbish. Also had a chat with my mum who has been hypo for a long time and she said she remembers it being tough.

I'm mainly gluten free at the moment but think I better be more strict :) That is great about the weight.

I think I'll talk to GP at the next appointment about the course of action if I do fall pregnant. I'm currently in a 2WW but will stop trying until levels are normal if I'm not pregnant.

Thanks

According to research in the US, the 'normal' dose of thyroxin should be about 1mcg for every pound of body weight. So, someone who weighs 8 stone, or 50kg, should be taking 112mcg per day (minimum).

Another important thing is to have your vitamin D checked regularly, as people who have hypothyroidism are more likely to be deficient in this vitamin.

Also, some people - I'm one, cannot convert thyroxine to the active form of the hormone, and need just to take I3, or iodo-thyronine.

There are others that don't do well on the sythetic hormones, and need the natural thyroid extract - think it's called Armour.

thanks for that info tb sounds like my dose will need to be increased a lot. I'm much larger the 50kgs :(

I live in the southern hemisphere so am not too worried about vit D. I get my 20 minutes or more every day but will add to to the list of possible tests. I know my iron was check and is fine so that is good.

tbI am waiting to start T3, saw endo and he agreed to it must have been the file of research under my arm! how are you finding it ? he says he has seen good results so I am desperately hoping it will help just waiting for letter to get to GP then I can start.

Hello. I was wondering if I could join in the natter.

Just told last week that some bloods came back borderline Hyperactive.

However, I saw a different Dr to usual to get the results and I found him to be really condescending and was querying my medical history. I have been back n forth to the GP surgery lots in the past few years with non specific symptoms - tiredness, IBS type symptoms, glands up and down, intermittant nausea but loving food when not, just feeling not right, kind of tired and off, anxiety for no reason - like twitchy and fluttery in my chest. All have come and gone and some persist. No conclusive diagnosis. I have been to breast clinic several times due to swollen glands/lumps in arm pit and breast - all clear for cancer but no explanation as to why I have had swollen glands intermittently for several (6/7/8) years.

My recent symptons are a really persistant tiredness,upper abdo discomfort (scans all clear for gall bladder issues) achey eyes, bowel issues - I am on medication to regulate me because I have always been very constipted. The medication has worked well until recent months - now I am back to constipation in excess of 5/6 days followed by several diarrhea days. My glands are up in my neck and armpit 80% of the time. Twice I have had a large sweeling on oneside at the base of my neck come up - lasted a few hours then goes. All the swollen glands are mostly on the one side of my body.

The Dr told me my blood result showed I was borderline for hyperactive thyroid but "probably not" as I am just inside the normal range. He didnt explain the result so I dont have any numbers etc to ask about online.

He then asked me to complete a questionnaire - it was a depression one. I scored just inside the mild depression - but 4points of my total score of 7 came from the one answer about How many days in a week I feel drained and tired.

I came out and felt like crying tbh. I felt really uneasy about his general attitude. I dont want thyroid problems anymore than anyone else but it certainly ticks a fair few of my boxes when I looked up symptoms. This Dr made me feel like I was a time water.

I have only just discovered this thread.

I was diagnosed with autoimmune hypothyroidism twenty years ago. Treatment has gone fairly well ever since; feel well and mostly symptom-free on 150mcg levothyroxine.

Thats great Three glad your symptom free, I am autoimmune hypo too I am on 175 levothyroxine but sadly far from symptom free hoping to start T3 as I seem to have a conversion problem, have been reading it can be genetic would love to know if people do well on T4 levo and T3 as that is my next step so fed up of feeling sick and tired, this is a great thread for those of us doing well and for those not!

Hawaiian have you been tested for coeliac disease? Symptoms similar to IBS plus tiredness.

Need a little reassurance please after a trip to Doctor Google.

It's possible to get pregnant while taking thyroxine isn't ? I'll ovulate and be able to conceive wont I?