Hypothyroidism Support Group
Hypothyroidism is the disease state caused by insufficient production of thyrohormone by the thyroid gland. There are several distinct causes for chronic hypothyroidism, the most common being Hashimoto's thyroiditis and hypothyroidism following radioiodine therapy for hyperthyroidism. Advanced hypothyroidism may cause severe complications, the most serious one of which is...
Hi
Im Kati 37 from UK. (it only lists US states when filled in form to join, im not from AL wherever that is!!)
Anyway I was born with Congenital Hypothyroidism which wasnt found until I was 23 months old, by which time I coudlnt walk, speak or sit up unsupported. I was very floppy baby with difficulty feeding. After much physio etc I did learn to walk and speak and attend mainstream school but stuff like learning to ride a bike, run, swim etc all took longer, other than that my history as very disabled baby was barely noticable other than mild speech difficulties and walking went odd when i got too tired.
Until age 33. My dad died in 2002 and after this i started having severe symptoms, my sight went funny for 4 months, they thought it was MS, it improved then 3 months later i woke up and my legs were so stiff i could barely move, got rushed to Neuro ward again they thought MS but no lesions or anything. I started having probs with balance and getting one foot to go in front of the other, i was constantly exhausted and my speech was so bad i could barely get a word out.
Eventually they thought to do a full bloods panel on my thyroid and found my T3 was dangerously low and TSH was sky high. Although fatigue and stuf improved I still have ataxia symptoms and its embarrasing, people ask if i have cerebral palsy as its that bad!
The thyroid group i approached before sent me a pack that mentions in it the thyroid can shut down or start producing something called 'reverse T3' due to shock or stress. I wondered if anyone else had exeperienced this or any other symptoms i have had?
Im very interested to hear from anyone whos experienced hearing/speech or difficulties wiht balance/co-ordination adn walking from their thyroid been underactive.
Thankyou
Kati
Member name: Katilea
Im Kati 37 from UK. (it only lists US states when filled in form to join, im not from AL wherever that is!!)
Anyway I was born with Congenital Hypothyroidism which wasnt found until I was 23 months old, by which time I coudlnt walk, speak or sit up unsupported. I was very floppy baby with difficulty feeding. After much physio etc I did learn to walk and speak and attend mainstream school but stuff like learning to ride a bike, run, swim etc all took longer, other than that my history as very disabled baby was barely noticable other than mild speech difficulties and walking went odd when i got too tired.
Until age 33. My dad died in 2002 and after this i started having severe symptoms, my sight went funny for 4 months, they thought it was MS, it improved then 3 months later i woke up and my legs were so stiff i could barely move, got rushed to Neuro ward again they thought MS but no lesions or anything. I started having probs with balance and getting one foot to go in front of the other, i was constantly exhausted and my speech was so bad i could barely get a word out.
Eventually they thought to do a full bloods panel on my thyroid and found my T3 was dangerously low and TSH was sky high. Although fatigue and stuf improved I still have ataxia symptoms and its embarrasing, people ask if i have cerebral palsy as its that bad!
The thyroid group i approached before sent me a pack that mentions in it the thyroid can shut down or start producing something called 'reverse T3' due to shock or stress. I wondered if anyone else had exeperienced this or any other symptoms i have had?
Im very interested to hear from anyone whos experienced hearing/speech or difficulties wiht balance/co-ordination adn walking from their thyroid been underactive.
Thankyou
Kati
Member name: Katilea
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I have had Ttp twice this year I'm 48 my doc said the next time Ttp happens they will take my immune system. Has anyone had this done? Does it work ? What other problems do u get?
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theatre and I are there already. I'm having a very berry tea with crackers, cheese and cherry tomatoes and she's having a joint with some beer and we're both on really comfy recliners on thick pile carpet. we need some help with the decor if anyone is around??
Have you had info from THYROID UK ? Lyn Mynnot and the team are a fantastic help and I found this group so much more helpful than BTF.
I suffer hearing and sight problems which I can be sure stem from my thyroid state.
I also have B12 injections and when due for this the rundown causes ALL my symptoms to worsen though the docs feruse to acknowledge this ( not unusual ) Do you have a supportive GP ? I hope so.
Gp eventually agreed to send me to an endo specialist, he tested T3 but said he would not treat me for it as I had borderline result. I went ahead with advise from THY UK docs and bought T3 for a trial...it helped.
A few years ago I travelled to the US for tests and treatment and got so much benefit from it was well for a couple of years on the meds prescribed but as I cannot afford to go back my symtoms are getting worse and worse.
Some people do a lot better on Goldshield ELTROXIN. It is not often prescribed specifically as it costs more !
Sorry to be so long winded in my reply.
Best wishes and hugs. Elljay
Thanks for answering. Are you female and were you born with your thyroid probs or not? I have been given goldshield before but i think it maybe was because they didnt have the other in stock when my prescription was due. I never been given it since and the one i got this time was Numark levothyroxine. time before it was alpharma.
The info pack i got was from lyn mynott that told about reverse T3. It was very informative, i wrote to my GP about this theory and he has agreed to test my T3 levels again as my TSH is still very high.
I think my doctors wasted alot of time treating me like it was in my head and i just wasnt taking my tablets. I have been on them since a baby i know how important they are. Sadly due to my communication difficulties as well i think, i get treated like i'm 'a little bit slow' and dont really know what im talking about which is very frustrating.
As my specialist does not think that spending more money on expensive drugs will reverse the damage already done they are reluctant to use NHS resources to provide me with anything other than the basic medications.
I got discharged from Neuro rehab and told to go home and get used to the wheelchair! Such compassionate doctors we have on the NHS!!
Anyway sorry for long reply, but im not holding out much hope for help from the NHS after my experience with them over the last 5 years.
Kati