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.

Helly I'm not qualified to answer the question about the heart enlargement, but can give an opinion. If the GP thinks it could be long term high bp and she was on too high a dose of thyroxine, and this raised her bp (as it can do) then it seems logical to argue there is a very high likelihood that the high dose of thyroxine contributed or even caused her heart enlargement. Ask her doctor.

Osteoporosis - I knew an elderly lady who took high dose calcium supplements can help with this. There were noticeable improvements after a year of taking supplements. there are other treatments

Yes, osteoporosis can be connected to hypo and we should be tested for osteoperosis about every year or few years to see if this is developing. Basically, have plenty of calcium in the diet, but do not take calcium at the same time as iron supplements as the calcium inhibits the absorption of the iron. IIRC neither calcium nor iron are advisable at the same time as thyroxine. Thyroxine is best taken just with water and nothing else, and no food before or after for about an hour.

(Personally I take thyroxine with water first thing, several hours before breakfast. Iron after lunch with a glass of orange juice or other vitamin c rich food as vit. c helps iron absorption, then a large milk drink in the evening, or cheese with/after evening meal and a yogurt dessert.)

Snowie I have only just been diagnosed hypo. I have no idea how long ago the thyroid problem started but I have had neck and back pain for about 7-8 weeks now. Its mainly my neck and the pain moves from side to side or can be all over. Could the 2 be connected? I've not done anything that could have caused the pain and despite doing exercises it's not improving.
I am very stressed at work though which i guess isn't helping. I'm seeing a physio next week.

I am 41. Had glandular fever about 10 yrs ago and then under active thyroid 'detected' during pregnancy 4 years ago.
I'm absolutely nackered. My skin itches (legs in particular), my brain goes into foggy Pause Mode and it's quite depressing. I'm only on 50mg of levothyroxine but when my levels are checked, doc says it's all at the right level. My glands swell when I'm tired, too.
I get ratty with my children and struggle to work part time (pathetic as it's from home). I love my job, too.
I put on 5lb each month in the week before I come on and have to watch what I eat v carefully.
Not sure whether all this is:
Being a mummy
Thyroid
Glandular fever

I used to feel better when I exercised but can't now as even a slow 20 min jog would poop me out for the rest of the day and I'd not b able to make it through to work until 8.

Gets me down ;(

Oh, and I'm ashamed to say that I don't know anything about the thyroid condition that I have. I was given the pills during pregnancy and told it was pregnancy-related. Then , told to continue. I feel that I've been duped. I should've been told more about it (I DID ask - several times) but haven't wanted to scare myself by googling. I don't really want to take the levothyroxine but do. I guess it's important - otherwise I'd not be given them (and all prescriptions) free. my DH has ulcerative colitis but, ironically and unfairly, pays for his meds. Don't feel particularly great on mine. Confusing.
Sorry to have ranted on!

Can I just say that I was diagnosed with Graves disease just after I was married (at the time I was pleased that weight was peeling off) and became quite ill because the condition was so severe it started to affect my heart. My legs swelled up like elephant legs and I presented with a pulse of 140. I had no idea until my legs swelled that I was unwell and then it all kicked off and I was immediately sent for an ECG.

As soon as the bloods came back I was diagnosed and and the levels were severe with no hcg present (although the facts are a bit vague now). I was started straight away on carbimazole and beta blockers. I was in shock because all of a sudden I realised I wasn't invincible and how dare my body let me down. I can't say I felt that much better very quickly. Was diagnosed in May and initially was not happy with the first consultant or his attitude. I went back to the doctor and was referred privately to someone very eminent who reluctantly agreed with my reservations about having radioactive iodine due to wanting to start a family and referred me for a sub total thyroidectomy. I found information very hard to find in 1991 but after seeing a well known gynaecologist and obstetrician was convinced that I should seek to be in optimimum condition before conceiving and to give my future dc the best possible chances. This did not in my opinion involve either staying on radioactive iodine or carbimazole.

I had a successful sub total thyroidectomy and produced two fantastic babies (this was a bit of a struggle but I believe there is a growing body of research to indicate an increased miscarriage rate because thyroid disease is auto-immune).

Naturally I have been hypothyroid for over 20 years and have taken 100mcg of thyroxine in that time. I have had no problems whatsoever; I do not suffer from depression, I don't have weight problems (could do with losing a stone but that's due to too much food and alcohol rather than hormones). I do get some aches and pains but I'm 53. I also had a slightly early menopause which may be connected - may be not.

At the end of the day I have lived with my dodgy thyroid, I have made sure it is managed, I have not blamed it for anything in my life and I don't think my life or overall health has suffered much as a result. I take the tablet every night and just get on with it.

The most frustrating aspect has been ludicrous attitudes in GP surgeries around 28 day prescribing which has got better and difficulties accessing blood tests because they have been subcontracted to another surgery incapabable of making appointments for patients.

Just trying to impart the fact that it needn't be a big negative or have a big impact and it doesn't mean that lots and lots of other conditions arise as a result. It is entirely treatable and controllable and many of the "associated" symptoms one hears complained about have other causes and need to be dealt with separately rather be blamed on the thyroid. It doesn't make you fat, it doesn't make you depressed and in my experience it doesn't cause aches and pains - age and a propensity to inherited dodgy joints and what my gran called rheumatism do that.

Mummy I could relate to a lot of what you said, so just wanted to say I understand!

married I think it is encouraging for people to see how it needn't always have a negative impact. I choose to ignore the rest of your post as it seems deliberately provocative. Apologies if I have misread that.

So glad for you married I know someone else like you and thats great for them too but it is just your opinion that it doesn't cause other auto immune conditions medical research especially the new stuff does link it to other conditions.

I would love to just get on with it too. I just got on with endometriosis and a huge ovarian cyst till it burst I got on with such a low haemoglobin my Gp says I still hold the record! I got on with lots of things not just medical in my life but I cannot just get on with this because I and many others are in fact ill even though we take our meds.
It is not at the moment ENTIRELY treatable its a real balancing act as in some people the thyroxine for some reason isn't absorbed into the body as we still have lots of symptoms.
It can take away all your energy so that can result in you not being able to exercise which could result in weight gain and becoming less active with many other symptoms could result in depression , so as I say delighted you are doing well, but please do not trivialise it for those not responding to treatment as you are.

Trying to state the facts as I have found them. Not trying to be provocative. Try to remember I have a chronic illness too and have to live with taking a drug every single day, I suffered a lot of miscarriages and have acknowledged the fact that it is auto-immune and was probably responsible for that.

Just trying to be encouraging and really really did not expect that level of vitriol.

Shan't try to be supportive again. If that's how bitter some of you are then I venture to suggest that some of your really do need to pull yourselves together and jolly well get on with it, get yourselves to an appropriate specialist and get yourselves sorted out rather than perpetually whining.

As you all were.

Not bitter at you but perhaps you could have worded it a touch more sensitively if you think that was vitriol

Well perhaps some people on this thread need to be sensitive to the feelings of those who might recently have been diagnosed. The majority of whom will be treated successfully but who might at present be feeling absolutely desperate because they have just found out they have a chronic disease which will require drug therapy for the rest of their lives. It isn't an easy time and they don't need the utter doom and gloom conveyed by some.

Yes newly diagnosed here

And all I'm trying to say is that there is every probability with the help of thyroxine you will be able to stay well, able to stay controlled and do everything you ever hoped you would do in spite of it.

I remember being totally devastated 20 odd years ago and there was no support at all. If you are newly diagnosed and need advice then I suggest you get in touch with the British Thyroid Foundation. They are fantastic, insightful, helpful, knowledgeable and very supportive.

married As per my first response, I agree with the encouragement that it need not have such a negative impact.

The purpose of this thread is to support anyone with a thyroid condition who feels that they need or want said support. Naturally many people looking for that will be in that position because they have tried so many avenues - doctors, medication, specialist, diet, exercise, supplementation and so forth - and are still struggling.

However in those first two posts, you most certainly imply or say quite deliberately that these "associated" symptoms (your inverted commas, not mine) are NOT related to the thyroid and that people should 'just get on with it'. Some of us do get on with it, and have done for years, are not 'fat', or 'perpetually whining', and are already seeing 'appropriate specialists'. Those words alone do not seem particularly supportive.

We started this as a supportive thread for anyone to post experiences and support who want it. Not everyone why has a thyroid condition will want to read the thread or post here, or want support or want to offer it. For the majority of people it is probably true that taking a simple tablet once a day sorts out their thyroid imbalance. Great, that is definately a message to get across, and everyone here has said go and get tests and treatment and go back if you're still not right.

It is important to keep going back to the GP and specialists.

There is no need to tell other people that their experiences can be sorted out in the same way yours has been, married. It is a rather insensitive thing to say, especially as it is clearly not true.

That said, thank you for sharing your experiences, as it is important to reassure and not scare people.

I dont see the bitterness and vitriol that you have, I see relief and encouragement.

I just recall how desperate I felt more than 20 years ago where there was little support or information for thyroid sufferers and I don't think that the doom and gloom approach is particularly helpful. The majority of people with thyroid disease will be treated optimally and will have few side effects.

I think it's a great shame there hasn't been more positivity on this thread.

As I have said there is fantastic clinically based charity called the British Thyroid Foundation which provides well researched evidence based advice and support and whose trustees are leading endocrinologists. If people need good information then I think that is a very good starting point.

I have found this thread wonderfully positive, because it is populated by people sharing tips, ideas, links and experiences as well as trying in their own small way to help others who are struggling. It is not merely a catalogue of ills.

I'm finding all posts here helpful be they good or bad experiences. It's good to hear that for some they are symptom free and i hope i get to that stage. This thread is helping me to gain some knowledge and explore more info via links shared.

I was also wondering whether anyone else experienced leg swelling and joint aches when they eat rubbish food.

Not experiencing those symptoms mummy but in a week of avoiding gluten my stomach has settled, thought I had IBS as did my GP and didn't connect it to thyroid at all but since reading good links on this supportive thread I read a bit about thyroid and gluten insensitivity could it be that?

I had swollen legs (well, I was puffy all over) and achy joints when pregnant, and after pregnancy. I wasnt eating rubbish food much, diet didnt seem to have any affect. There wasn't anything I could do about it. Puffiness shows first on my face and middle these days.

I dont know whether there is a pattern to the various symptoms, relating to diet, exercise, lifestyle, age and occupation etc.

I have had a horribly stressful week and that seems to have affected my thyroid function, but it is hard to understand it or know what to do about it.

I've also got a constant strong taste of salt in my mouth. Have been drinking lots of water but it doesn't help.

married I think I understand what you are trying to say. I know that I have been very lucky in that in the nine years it has taken me to get treated anything like properly I have been able to continue to work and by pacing myself have still managed to have a life, despite being hypothyroid and having two other auto immune diseases.

It is a fact though that some people don't manage to do this and remain heavily symptomatic even on treatment. I think it is significant that one of the speakers at the conference I was at recently said that the major cause of not being better on treatment is being on the wrong dose - usually too little. This then leads to scrapheap diagnoses like CFS/ME and fibromyalgia and a downhill spiral.

Unfortunately, the level of ignorance among GPs is such that this applies to a lot of people who are not able to pull themselves together and get on with it because the NHS is keeping them ill and expecting them to learn about biochemistry and then advocate for themselves against the medical establishment is just too big an ask.

You seem to have been very lucky, which is great, and we shouldn't forget that for probably the majority of people, this is the experience. However, for a significant minority it is not and there is very real frustration and distress out there.

Hmmm
Thank you all for sharing your experiences. Most helpful is to know I'm not alone. You've all promoted me to contact the British thyroid association and to ask for another blood test.

MummyoftheYear please do come back and say how it goes.

Be very careful with the BTA. They take the view that thyroxine is the only treatment for hypothyroidism and that if you have enough thyroxine to bring you back into range, but still have symptoms, then they are caused by something other than a thyroid condition.

More worryingly they say this:

"There is no indication for the prescription of T4 or any preparation containing thyroid hormones to patients with thyroid blood tests within the reference ranges."

This is one of the reasons it takes us so long to get diagnosed and treated. These are the people who are supporting doctors in keeping us unwell.

Oh, you said British Thyroid Foundation.

It's good that a previous poster has had a positive experience with this organisation. When I was desperate, I investigated my local support group, only to find that they are hand in glove with the endos at my local hospital who will not treat until TSH reaches 10, regardless of FT4 and FT3 levels.