New on this website

[Ana24]

New on here , wondering anyone else with the same condition and how it affects or affected them. growing up and realised couple years ago that my condition is nothing to be a shamed off , It's who I am and what I'm live with and will do all my life !

[Nanaedake]

Hello Ana and welcome to the forum. If you have a thyroid condition you're in good company. Did you want to explain a little more since you ask whether there are other people with the same condition but you don't say what your condition is. I expect there are people on this forum with every variety ever discovered and many who have grown up with it. I expect you'll have a lot to contribute if you've lived with it for a long time. I hope you enjoy the conversations.

[Ana24 in reply to Nanaedake]

Hello nanaedake thank you ! Sorry my condition is hypothyroidism I was born without a thyroid gland - doctors diagnosed me officially with it at age 5 ! At first they just thought I had a thyroid but underactive but then I had a scan when I was 5. I take levothyroxine tablets everyday regular check ups. When I was young I struggled with my speech I had a deep tone learning at school I found it hard I was a slow developer , my weight was always up and down. I was ill all the time had poor weak muscle and joints I used to fall over all the time and got tired all the time ! In my teen years I struggled with my monthlys not regular ! Terrible mood swings ( like a normal teenager ). Now in my 20s. Been in a relationship for a while thinking of starting a family but my monthlys are so over the place ! I haven't been on again in months not preg yet thou. Had a miscarriage two years ago ! My weight is very up and down ! Just wondering if anyone has had same experiences ? In the same boat ?

[Hidden in reply to Ana24]

Dear Ana,

Sorry to hear about all you have been though. It sounds as if you are not at optimal health and are maybe not getting the best possible treatment ( a common issue with thyroid patients) You do need to have very good health to have a baby, not just to conceive but to have the energy to cope with a child and to make sure the child has all its nutritional and hormone needs met in the womb.

A lot of people find that if they have no thyroid gland that they do well with a natural dessicated thyroid extract. The thyroid gland produces five kinds of hormones but levo only replaces one type which is the thyroid storage hormone. It is not know what some of the other hormones do that are produced by the thyroid gland but it make sense that they are produced for a reason.

It is almost impossible to get a prescription of NDT on NHS but if you look at thyroid uk website you can find an email address to apply for a list of more helpful doctors some of which will prescribe NDT.

Also you will need a good level of vit D, ferritin,B12 and folate to absorb thyroid hormones so make sure these are checked.

Keep exploring this site and learning about your condition. It is not common for people to be born without a thyroid gland but I expect there are one or two on this site. There are lots of hypothyroids and people who have had their thyroid removed by surgery.

Welcome to thyroid uk

[Nanaedake in reply to Ana24]

Wow, how come it took them so long to discover it? Thyroid affects everything, we all know how much on this forum. Some doctors don't seem to have much of a clue what a huge impact it has. I'm afraid I was diagnosed in adulthood so I don't share your experience of growing up with it but I really sympathise with how difficult it must have been.

Getting tired seems to be a common theme with all thyroid conditions. Do you find your doctors helpful with advice about trying to concieve? A lot of women have a miscarriage for their first preganancy, including those without thyroid conditions, but hopefully the next time all will be fine as your body's had some practice. Are you on the right dose of thyroid meds to help conception? Also, are all your vitamin levels good?

[Ana24 in reply to Nanaedake]

They waited till I was 5 for some reason. And at 5 they realised I have a allergic reaction to general anaesthetic ? Apparently it dosent agree with levothyroxine medicine ? I used to have a great doctor when I was younger he was so amazing but he retired ! When I go to the doctors now I don't think they know how to deal with me or my concerns especially when it comes to starting a family. Yeh I know miscarriages are common im just worried I'm not going to consive or keep losing babies ! Vitamins I do take zinc for my immune system

[silverfox7]

Welcome to the forum. It's sounds as though you have never been correctly medicated. Have you done recent tests results you can post with the ranges? The rangesare important as they differ from lab to lab. If you are in the UK you are entitled to copies so ask your GP if that's the case. Then start a new post with them and we can see what is really happening. The miscarriage was probably because your levels were all over the place so hopefully we can give you good advice on what you are aiming for.

[SlowDragon Administrator]

First thing is do you have any actual blood test results? If not you need to get hold of them. You are entitled under data protection laws.

You may be able to view test results online - ring and ask about this. If you can then apply for online access to your account. All GP practices are supposed to offer this, in reality very few have blood test results available online.

If not then ask for print out of recent tests. Pick up in a day or two. They may make a nominal charge for paper.

You need to know results for TSH, FT4 and FT3. Do you also have high thyroid antibodies? You need to know. Did GP test these? If not ask that they are tested.

High antibodies with no thyroid would presumably not be likely....but you never know probably best to check

Low vitamins with thyroid condition are VERY common. Low vitamins that affect thyroid are vitamin D, folate, ferritin and B12. Important to test these. If they are too low they stop Thyroid hormones working. Have these been tested, if not ask that they are. Always get actual results and ranges.

For conception and successful pregnancy the guidelines say TSH needs to be under 2.

If you can't get full thyroid and vitamin testing from GP

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after.