New here and desperately need help with thyroid... - Thyroid UK

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New here and desperately need help with thyroid issues.

WinnieH
WinnieH

This is my first post here and I feel so very unwell and extremely low. I'm hoping that those that have been through this can help please.

I have had a thyroid problem for 27years and have been on T4 all that time and have never really felt well, feeling very low a lot of the time (a period on SSRI's), lots of weight gain, fatigue etc., but have managed. My dose of Levothyroxine during those years alternating between 75mcg and 100mcg. I've mainly had Hypo. symptoms but with occasional overmedication my main symptom is palpitations and insomnia.

In the last 2 years my TSH has been really erratic, from 13.5 and more recently 0.01. In the last 4 months I've become so unwell and depressed. I don't want to leave the house, no sleep, no appetite, sweating, sore eyes, exhausted, and the list goes on! But temp. is 35.00. and no palpitations. So I'm not sure if it's Hypo. or Hyper? Is my TSH low because the T4 is staying in the blood stream? I feel as if I'm heading for a nervous breakdown and can't stop crying.

Seen 2 Drs. who keep telling me to stay on 75mcg and it will right itself. Asked to see an Endo. and was finally referred but the Endo. refused to see me sending a letter saying he wouldn't see me as I was OK!

I'm taking Selenium, zinc, molybdenum, B12, folate, other B vits. and have just started iron. I'm trying to help my Adrenals.

I feel so unwell and am totally on my own with this and finding it hard to cope with 'day-to-day' living. I know people cannot tell me what to do but any help or suggestions will be gratefully received.

16 Replies
oldestnewest

Welcome to the forum, WinnieH.

Ask your GP to refer you to a different endocrinologist as the first declined to see you. Email louise.roberts@thyroiduk.org.uk if you would like a list of member recommended endos.

TSH fluctuating between 13 and 0.01 suggest you may have autoimmune thyroiditis (Hashimoto's). Have your thyroid peroxidase antibodies been tested?

TSH 0.01 is low because your pituitary gland detects sufficient T4 in your blood. Have FT4 and FT3 been tested in addition to TSH?

You are hypothyroid otherwise you would not be prescribed Levothyroxine. Palpitations and insomnia can be due to under medication as well as over medication.

Did you have ferritin, iron, vitamin D, B12 and folate tested before supplementing?

WinnieH
WinnieH
in reply to Clutter

Clutter thank you so much for replying.

I have not had any tests done except TSH. My Dr. refused to do any others when I asked for FT3 and iron and told me the lab. will refuse also.

I am going to have to get a private test done with Blue Horizon. When my results come back I will post here and perhaps you can help me interpret them.

With regards the Endos. I'll email for the list but I think it's highly unlikely my Dr. will refer me again. Its very difficult to insist when you feel so bad!

Clutter
Clutter
in reply to WinnieH

WinnieH,

Post the results and ranges in a new question as updates are often overlooked. I'll be happy to interpret them.

Arrange the blood test early in the morning when TSH is highest and fast beforehand (water only) as TSH drops after eating and drinking.

WinnieH
WinnieH
in reply to Clutter

Thanks. Will Do that.

humanbean
humanbean
in reply to WinnieH

And also leave 24 hours between your previous Levo dose and the test.

WinnieH
WinnieH
in reply to humanbean

thank you

Hypo51
Hypo51
in reply to WinnieH

Hi winnieH

Sorry you feeling so unwell, I'm new here so can't advise about results yet, but I can sympathise with how you're feeling,

I know it's hard to insist when you feel unwell and are alone, I had the same with my dr actually felt bullied by him, but try to be strong and insist, you have come to a good place on here, lots of advice and support too, hope you get to feel better soon.

Hi there. I'm relatively new here also, but Im thinking whomever replies (and there are several really learned participants on this site who will be helpful), they will ask you for your most recent lab results as well as the range. For example, let's just say a person had his or her FT3 done. They would write 3.4 (2.2-4.0).

This would indicate that this hypothetical persons free t3 is 3.4 and the lab used a range of 2.2 to 4.0.

So if you can, please post your labs with your range. Whatever labs you had, including, if available: FT3, FT4, TPOab, Tgab, Vitamin D, Vitamin B12, Selenium, Ferritin, folic acid, TSH

Or whatever you have. Make sure to put the ranges...I'm not versed enough to suggest anything but please don't worry, so many on this site are and they will reply. Hold tight.... oh I see an admin has replied to you!! Great...you're on your way.

WinnieH
WinnieH
in reply to TappedOut

Thanks TappedOut.

I have just contacted Blue Horizon Medical for their Thyroid plus 11 test so hopefully will beable to come back with some results and ranges fairly soon.

Hello Winnie and welcome to the forum:

Clutter has briefly mentioned your nutrient levels already.

Please read thru this post and note the response by SeasideSusie - it details highly recommended tests to have done, nutrient levels, etc - generally essential reading for the new members.

healthunlocked.com/thyroidu....

Take a look thru. Then post back with questions for the forum! X Rusty

PS: just a quick note: I've attached a link to Hypothyroid Mom, with the article discussing NDT (natural Dessicated Thyroid). Take a gander thru later, after you've let the earlier info settle a while OK. Too much too soon can result in info overload, not a good idea when we are feeling fragile 😰

hypothyroidmom.com

TappedOut
TappedOut
in reply to Rusty64

Rusty64's advice is so true!! It can be overwhelming, especially when feeling so rough. That hyperthroidmom is a great link/resource.

Thanks Rusty64.

Its so heart warming that some have come back to me immediately to help. also for the links.

I will have a read thru and when my foggy brain takes the info. in will come back with questions.

TappedOut
TappedOut
in reply to WinnieH

Yes, take your time. Once you get your labs we can work from there. One step at a time. Everything is going to be ok...you're moving In the right direction, even though you're feeling badly; coming here is the best thing I ever did. And I pray, you will find that too....

TappedOut
TappedOut
in reply to TappedOut

Also, I think an admin mentioned make a whole new post when you get your lab results, and post them with the ranges!! If you tag them on this trail, it may get lost.....

Hi Winnie

I hope you find the answer to your problems. Keep on! many people wishes you well including myself. One day at the time.

Monsie from Australia

Thank you to everyone that has come back to me.

It's amazing how just knowing others care and are going, or have gone through the same problems and found answers, helps. I went to bed last night with an easier mind!

My test kit is on the way and I'm reading as much info as I can. Will come back with results and lots of question.

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