So fed up!

[fedup777]

My thyroid was shut down -+15 years ago. I have had nothing but issues since then. It was discovered a year ago that my thyroid never needed to be shut down but rather my heart skips beats and had I been given beta blockers I would still have my thyroid....My specialist recently admitted to me that I am another victim of 'treatment excitement' from the medical community meaning they shut my thyroid down without properly investigating. I also have a pituitary tumor and because both of these organs impact hormones - I am a hot mess! I have been on Synthroid since the beginning alternating doses as required - but I am exhausted! The specialists say my numbers are 'normal' even though I have every symptom of hypothyroid and I am so fed up with this existence! At 46, no sex drive, hair loss, brittle nails, excessively dry skin (that no cream helps), burning hands, feet, insomnia, night sweats with no sweat, cold and heat intolerance - it is a nightmare! Has anybody here actually gotten to the point of feeling 'normal'?

[Lizzo30]

GABA could help with your insomnia issues you can buy it on ebay at least if you could sleep you would feel better It helps dry skin too it is well worth a try you don't need much I break a capsule up and just have a pinch then put the capsule back together , it also provides growth hormone which you are probably lacking

[Jazzw]

When you say “shut down” do you mean you had radioactive iodine treatment or something different?

Anyway—first step. You’re either undermedicated or have nutritional deficits and/or need liothyronine adding to your Synthroid.

Do you have a copy of your latest thyroid hormone blood tests to share with us? TSH, FT4, FT3 etc?

And if you have ferritin, B12, folate and Vit D blood test results to share, even better.

And yes. People do get better. But it can take a bit of detective work and trial and error.

[fedup777 in reply to Jazzw]

I will upload my last blood tests - just waiting for the most recent. The doctor said although it says low, it is 'normal' and I will always feel this way and they really only focus on the T4 levels? I don't have any reports on the ferritin, B12, folate and Vit D. I take vit D daily and B12.

thyroid report

[Jazzw in reply to fedup777]

Thanks for posting those. So, yes, your TSH is low but in a treated hypothyroid patient that’s not unusual and not something to worry about given your FT4 and FT3 are in range.

Many people without a thyroid—and effectively you haven’t got one now—find that eventually they need to add a small amount of T3 (liothyronine) to their Levothyroxine (Synthroid). Is it something your doctor has ever mentioned? It might be worth asking to try it. Your FT3 levels are 71% through the range but you might find you felt a little better if they were higher.

Regarding Vit D, B12, folate, ferritin etc—it’s well worth knowing what your levels actually are, as it’s common for hypothyroid people to have poor gut absorption. Even though you’re supplementing Vit D and B12, it may not be enough—plus you should always supplement folate if you supplement B12 as they work together.

It’s very common for thyroid patients to have low ferritin/iron deficiency.

Would your doctor be amenable to testing them, do you think? A deficiency in any one do the nutrients I’ve mentioned will leave you feeling terrible.

[fedup777 in reply to Jazzw]

Hi - no he has never mentioned this liothyronine before. I was put on a higher dose of the Synthroid last summer and ended up bleeding internally from a thyroid storm. It was terrible! Now I am so afraid to take a higher dose - it took 3 weeks of the higher dose to really do me in. It took another 4 weeks to actually recover - I honestly thought I was going to die. I have IBSC and so additional iron pills etc. wreak havoc on my guts. I am unsure of the ferritin - but I do eat oysters, red meat etc. to try to help with low iron. It is just a nightmare honestly - I cannot seem to just feel good! To have energy is a dream I wish..... lol

[Jazzw in reply to fedup777]

Oh poor you, that sounds awful.

Often doctors seem to forget that another way to get iron levels up is via an iron infusion—that wouldn’t upset your stomach. And if your B12 levels were low that could also be rectified via injection. It sounds like it would be well worth finding out what’s going on.

[mdwilson1975]

Hi there - I just saw this and sorry for just now posting. Fedup777 i have the exact same issues everything! Did you try the vitamin injections? I feel like I need to do this as well.

[pennyannie]

Hello FedUp and welcome to the forum :

If you had a fully functioning working thyroid it would be supporting you daily with trace elements of T1. T2 and calcitonin plus a measure of T3 at around 10 mcg plus a measure of T4 at around 100 mcg.

T4 - Synthroid is a storage hormone and needs to be converted by your body into T3 - the active hormone that the body runs on and is said to be around 4 times more powerful than T4 with the average person needing to convert around 50 T3 daily just to function.

I'm guessing you are Stateside, and understand you can be prescribed T3 - Liothyronine relatively easily - and in this way you can replace your own ' lost ' T3 thyroid hormone production.

You also. I believe, have easier than we have, and that's not difficult, to access Natural Desiccated Thyroid which contains all the same known hormones as that of the human thyroid gland ?

Maybe ask your doctor or if s/he believes there is only T4 - find another doctor, which again I think, is easier there than here.

In order to go into more detail with your T4 monotherapy treatment we do need to see blood test results and ranges for TSH, T3, T4, inflammation, and antibodies, and ferritin, folate, B12 and vitamin D.

Did you have a thyroidectomy or RAI thyroid ablation ?