My out of control thyroid

My out of control thyroid

Hello to all

I have hypothyroidism for 27 years , and taking 100mcg thyroid meds generic , but in the last 2 years my body started to change and I gained over 40 pounds , extreme tiredness , taking depression medications , anxiety , hair loss , vision problems , bloated as I am pregnant , I was 140 pounds and fine but now I am a complete disaster ,,,, below is my recent tests and Doctor reduced my meds to . 88 mcg and to only take it five days a week instead of daily 😪 I need all the help I can get from you thank you all

And God bless

31 Replies

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  • Jana, that is disastrous. Obviously your thyroxine??? I'm thinking was not converting and now you have even less to convert. There are several factors that cause this but it would be good to know your FT3 level to see what is happening. Do you think you could get that test? Some people in the UK use Blue Horizon and pay for their own testing. If worse comes to worse, we can always purchase our own T4 or T3 or NDT. The system is working against us at the moment and we often have to take things into our own hands.

  • Hi , what is FT3 stands for ? Please

  • I'd phone your GP and ask to be referred to an Endocrinologist for the fact that:-

    1. Your dose of levo is too low (to fit into a range).

    2. You've not had the Free T3 tested and if it is low you haven't sufficient going into your T3 receptor cells. We cannot function without sufficient T3.

    3. You are pregnant.

    Levo is inactive also called T4 and it's job is to convert to T3 (the active hormone) needed in our billions of receptor cells in order for us to function normally.

    Before the blood tests were introduced we were prescribed NDT and the doses ranged from 200 to 400mcg. One doctor, now deceased, was always informing the BTA etc about how low our doses of levo are.

    The fact that you are pregnant and the doctor has lowered your dose to 'fit' into a range doesn't bode well for you and baby and I am NOT medically qualified. Many women miscarry when not on an optimum and I would ask to be referred to an Endocrinologist

    You must ask him for a Free T3 blood test or get your own and I'll give you a link and cursor down to read about FT3:

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

    We have to read and learn if we've to recover our health. It's not the doctors' fault that they are so poorly trained in Endocrinology as they used to recognise all of our clinical symptoms and prescribe NDT but the BTA now directs that it is levo only. Unfortunately none of the members of the BTA appear to have a dysfunction of their gland otherwise they would be more sensitive to the patients' needs.

    I see your GP has prescribed depression meds and your 'depression' might be due to low FT3 as psychiatrists prescribe liothyronine (T3) for some of their patients. Don't stop anti-d's without discussing with him.

    You also have high antibodies which means you have an Autoimmune Thyroid Disease called Hashimotos and it is the commonest form. The antibodies wax and wane until your thyroid gland doesn't work and you are then hypothyroid but the treatment for Hashis or hypo is the same. Going gluten free helps reduce antibody levels.

    Always get your blood test for thyroid hormones at the very earliest and it is a fasting test although you can drink water. Also leave about 24 hours between your last dose of levo and the test so you get an accurate blood test and take it afterwards.

  • My friend , I am not pregnant, my thyroid symptoms are making me feel that way ,,,, thanks for your feed back

  • Ya and I am seeing an Endocrinologist

  • Ask him if you could have your Free T4 and Free T3 tested sometimes even if GP requests the lab wont do them if TSH is 'normal'.

  • Hi , I need to know how to lower my antibodies?

    And still keep my thyroid hormone normal

  • I was on standard thyroid meds for 18 years(thyroxine in UK).The last 4 years I gained much weight,bloating(looking pregnant)depression,anxiety,hair loss,mental & physical fatigue,swollen ankles,painful feet,weak,stiff muscles etc etc.

    I now take liothyronine(T3) & am feeling so much better.Your story is typical of long term use of T4 for some people who then go on to do well on natural dessicated thyroid or thyroxine with liothyronine or liothyronine on its own.

    Many buy their own meds online because their doctors will not help

  • Omg thank you so much for explaining I am a complete mess right now , but I will go all the way to get my health back

    Thank you

  • This site is 99% responsible for my health improvements.It is a great source of guidance & information.Use the search box to read as much as you can of other people's experiences.

  • I will for sure , everyone is being very helpful and I am so happy to connect to all of you thank you

  • Hi there , I don't know much about NDT and I would like to know more, so if you can give me more info I would appreciate it , I am struggling with my meds and need alternatives , and can I combine them with my meds???

    Another thing does NDT help shed the weight ????

    Thank you

  • Everything you need to learn about natural dessicated thyroid(NDT) can be found on this wonderful forum.Use the search box to find all the relevant posts.

    Also go to Thyroid UK's home website.

    and "Stop The Thyroid Madness"website

    and "Thyroid Patient Advocacy UK"website

    Its a long slow learning process-take it easy!

    We are all desperate to get well,but we are having to educate ourselves & take our health into our own hands,not easy when brain & body are not functioning well.

  • Also, its always a good idea to increase your Vit D. Of course, if you ask your GP to test the vit D levels and take accordingly that would be better. I found my depression stopped after increasing vit D on the advice of my endo who sees outside the box. I took 3200 mcg.

  • Ur right I am low on D and I take 50000 units once a week , do you think that's not enough ???

    Thank you so much

  • That sounds like plenty to me however the bloods will confirm that. If you are over dosing that too will give side effects and I believe the body eliminates what it doesn't use. Need to have a test for measure of vit D in body.

  • Why do you only take it once a week? Why dont you split the total over 7 days? I would do that.

  • You mean VD? That's how it's prescribed per doctor , do you think it's better to take daily dose???

    Thank you

  • Absolutely!!

  • You will see, on here lots of information and advice about importance of good levels of B12, folate, ferritin and vitamin D and gluten connection to autoimmune Hashimoto's too.

    vitamindcouncil.org/tag/aut...

  • I will ask for all those tests and I am so thankful to you

  • Janah, can u just clarify if you are pregnant or were you saying boated like your pregnant?? If you are expecting should never have been a reduction in your levo? It is usually increased during pregnancy not reduced?

    That baffles me!!

    Your symptomatic too with a high antibody count, I would be seeking a second opinion from an endo specialist which you GP should refer you for. ASAP

    Like one of the ladies said, the GP simply doesn't have the knowledge for something as complex as this.

    If you are pregnant for the sake of you BOTH get back to your GP and make sure he listens to you and gets you referred.

    Good luck my lovely 😊❤️ XXXX

  • Hi , first I am not pregnant lol , don't worry my dear,,, it's my symptoms that's making me feel bigger everyday

  • Janah, do you have enough thyroxine to continue at 100 mcg per day? OK, now that we know you are not pregnant, lol, we are not as concerned about immediacy but still your symptoms are mounting. Shaws has explained how thyroid hormone works, or in your case, not working very well. When you are short of hormone you don't burn calories as fast, you don't digest as fast and you are probably not getting the nutrients from your food so then you become deficient which causes another set of problems. Your brain uses lots of thyroid hormone so when you don't have enough your body determines how much goes where. I'm not entirely sure where it is more important but your heart definitely will be getting what it needs in order to keep you alive but we want all of our organs to get what they need and yours obviously aren't. Putting you on antidepressants also interferes with that conversion to T3. (Serotonin and dopamine are also a problem of low thyroid.) Some people here are taking ONLY T3 and doing very well.

    It's very troubling that even Endos don't seem to understand these things but that is the way it is. I can't stress enough that it is to your benefit to keep learning and asking and if need be TREATING yourself.

  • When we are not getting enough hormone for our needs,either through under-medication or because we are not converting well(ie our bodies are not using the medication)not only does our metabolism slow down & we pile on weight,but also,we bloat with water & mucin.Round the middle is common with this illness.

  • I am not a doctor, but from my experience ,it's almost deadly to take thyroid meds like that /meaning changing daily dose .stay on the same dose ,and insist on no dye synthyroid .....50 mcg u can split if u have to depending on your dose and ............u may need high blood pressure pills with thyroid pills me and my mom and bff....we take lisinipril ............I do go to Ucla endo ......I hope I can help u feel better .....I've had this god awful disease for 8 yrs I have been to hell and back ....pray God bless 🙏🏻

  • I am on .88 mcg five days a week , I am confused why my endocrine did this and it's driving me crazy

    God bless you always

  • Thyroid meds cause high blood pressure and a lot of people don't realize it .i was so sick from the high blood pressure , i was in the hospital 3 times or more a year until on the prper dose and my gallbladder was going ( get gallbladder function test ). if you feel meds are not working )and my meds where not metabolizing properly . I hope this helps 🤗 Ps ,,,,get lots of sunshine

  • Why take high blood pressure ????

  • Where's your results for free t3? Go to stoptherhyroidmadness.com and consider taking natural dedicated thyroid medication. A lot of what may be going on is because your free t3 is low and you might possibly have adrenal issues. Your synthetic thyroid medication is a t4 only medication. Good luck!

  • Hi , I am going to request more thyroid tests for sure and I believe what you said cause I am lacking energy , as far as taking t3 meds is that to be taken with my current meds???

    Thank you for your feed back

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