Update – got meds on trial basis
AnonymousMarch 14, 2007 at 10:30 am
I have not been on for a while. I sank into the pits of despair. See earlier thread by me.
Gone on to suspect a thyroid disease:
22.Feb.07: TSH 4.30 (0.4-4.0)
03.Jan.07: TSH 5.00 (0.5-5.0)
03.Jan.07: [B]TPO >1300 (0-59)[/B]
15.Oct.06: TSH 5.09 (0.4-4.0)
My symptoms have become worse with brain fog, concentration problems, listening and focusing problems. I just seem to stare into nothing like an apathetically depressed. My balance is worse as well. I can hardly walk and look drunk when walking. Also I have a full page of unspecific symptoms which can relate to a number of diseases. 🙁
I saw a new endocrinologist last week at the hospital, and he was inclined to tell me that nothing was wrong due to the above blood test results, but when he saw me, he became deeply concerned for me and also angry with my GP for not presenting my case properly to him. He wanted more papers on me before agreeing to treat me.
However, he is old school and said that from the blood tests I would probably develop hypothyroidism in some years. Then my husband exploded and said why not treat me now as I do have symptoms already. I was too apathetic to answer for myself. Amazingly the endocrinologist agreed to a try with the synthetic med for hypothyroidism/Hashimoto’s Disease.
I have started with 50 micro-grams every second day for three weeks, and then 50 micro-grams every day. I have taken three pills by now, and I think it has helped a little already. A little less concentration problems and wanting to do things again.
The endocrinologist will call me back to hospital as soon as he has seen my other health papers and decided whether or not to treat me further.
This is my update. My hope is up a little due to the trial meds, but I still fear to be rejected as I seem to be an unusual case that nobody wants on their hands.
Thank you all for your support and prayers. 🙂
AnonymousMarch 14, 2007 at 11:39 am
Ninus I am glad you posted an update. Last year I got tested for thyroid problems and once my TSH was 11.7 but then got retested a few months late and it was 3.5. But my antibodies 250 once and the second time it was 150. I go see a Rheumatologist hopefully soon and will ask him what he knows about Hypothyroidism.
I got more bloodwork done yesterday for my Family DR so if there is something wrong I will know I hope within the next month.
I wish I could do a trial of meds also I know that would help me but DR’s see the numbers and think to bad nothing I can do for you.
AnonymousMarch 14, 2007 at 12:09 pm
I HOPE that this helps you, at least enough to feel you can carry on more ‘normally’ again. I wonder how long it will take for the full effect to be seen? I was looking at your phone number yesterday wondering how you were doing. Please keep in the loop. BTW, so glad your hubby still goes to the docs with you!
AnonymousMarch 14, 2007 at 10:06 pm
I hope the thyroid meds help.
I too encountered anti-bodies to thyroid (thryoglobulin and thyroperoxidase, thyroid ultrasound negative) and the endo I saw said I may be developing hashimoto’s thyroiditis, but did not think medication was apt at this time.
I also felt, like your husband, that the low risk side effects from the treatment plus the speculative value of benefit of medication implementation far outweighed any negatives.
I have a follow up with the endo and will pursue that angle and see if the meds help. I also suffer from cognitive defecits similar to those you explained.
I have found concerta at a low dose slightly helpful for cognitive issues.
For balance I have instituted aldactone (a diruetic), but it is way too early (2 days) to tell if this helpful yet. Additionally I am taking a very low dose. Pan-systemic autoimmunity can affect the inner ear. The ENT I saw said the aldactone is about 50% helpful.
AnonymousMarch 15, 2007 at 3:09 pm
My fingers are crossed for you, Ninus. I hope this is the answer to your problems. i’ve been on generic synthroid for over 8 yrs now and my numbers aren’t that far from yours, and i’ve been having problems for a few yrs now. my med dose has been altered and i think we have finally got the correct dose. it can take 4 to 6 weeks for any noticable improvements. i hope the dr takes your case and really listens to what you (or your hubby) tells him. You are in my thoughts and prayers. i’ve been thinking about you alot lately, glad you came back to us. Big Hugs. take care.
AnonymousApril 8, 2007 at 11:28 am
Thank you for all you answers and prayers!
[B]Jfitzen[/B], your prayers including my husband and doctor really touched me.
[B]Sue[/B], your numbers do not sound so good, I don’t know why the doctors cannot see it. To me you should be on trial meds, and I hope that you are by now.
[B]Ali[/B], you asked how long it will take for the full effect to be seen. Most of the persons on different thyroid forums say that they begin to feel something by 6-8 weeks, but full effect is 6 months to 1 year.
[B]Zipzip[/B], I hope that you too have been able to go on trial meds. I myself am not inclined to take any other meds than the ones appropriate, so I am reluctant to try antidepressants, concerta for cognitive issues or aldactone for balance.
[B]Angel2ndclass[/B], I am trying Eltroxin T4 meds. Most of the people I have meet online are on approx. 200-250 mikrograms doses, and they say the optimal is to get a TSH in this range 0.3-1.0, but that each individual has to discover their own optimal range. I hope that your symptoms have improved.
[B]UPDATE FROM ME AFTER FOUR WEEKS[/B]
[B]Good news[/B]: my stomach is working again, my balance is significantly getting better – notised by others, my walk has improved – I walk just a little faster than the usual snail pace, but I am a long way from walking as usual. I am getting better at talking, carrying, doing things for longer periods than before. Like GBS = getting better slowly.
[B]Bad news[/B]: (or good as you will): I have discovered that my vitamine B12 level is very low and might give me the parastesia and pain and other things. B12 is down to 209 (200-9999). Some say that B12 can give symptoms before it goes below level, and that B12 should be over 380 or even 500 in order to feel better. Now I have to find out whether B12 supplement orally helps or whether I will have to get injections.
I think that I should be checked for adrenal problems as well, but it might be difficult to convince the doctor, and I am still waiting to be called to hospital again, so I still don’t know whether the endo will agree to treat me or not.
This was my news for now, take care, all of you, and thank so much for being there and for prayers.
Love to all of you!
AnonymousApril 8, 2007 at 11:48 am
Ninus I am glad you got good news we love to hear good news. I know you hate bad news but at least you know what it is and now is to find the right treatment.
Myself I saw a Rheumatologist for the first time last month and my Thyroid number were the same and he said that it was not a problem the number that was at 150 was 149 still high but he says some people have high numbers there. I did not get all the results of my blood work will go see family DR for an exam on April 20th and will ask him for the rest of the results( Rheumatoid Arthritis and lupus). I go for a Doppler Ultrasound On May 23 and get the results on June 26.
Wishing you the best
AnonymousApril 8, 2007 at 1:47 pm
[QUOTE=suewatters1]my Thyroid number were the same and he said that it was not a problem the number that was at 150 was 149 still high but he says some people have high numbers there.
By the thyroid number do you mean the TPO antibodies? Or do you mean TSH? You need always to demand a copy of all your results to examine a home. That way you will be able to get an opinion from others, and to show them to other doctors with whom you may come into contact.
All the best to you too 🙂
AnonymousNovember 8, 2007 at 2:05 pm
Long time no see.
I am getting better and getting acknowledged as having hypothyroidism or rather Hashimoto’s.
For 8 months I have been on T4 replacement called Eltroxin, with a slow increase and I am now at 100 mcg a day.
It turned out that all my unspecific symptoms did indeed relate to Hashimoto’s. They have mostly gone away now. When meds are optimal, I have no symptoms whatsoever, except when I exhaust myself. Neuropathies are gone, walking difficulties gone, memory is back, etc. I am back, and I love being myself again.
I am back to work full time, and though I do get very tired, I am very happy to have my life back.
As you may know Hashimoto’s is an autoimmune disease, and I still feel connected to you all in this forum.
A couple of days ago I came by, and I almost wept seeing your names in here. You meant so much to me at a time when I was going through hell to get a diagnose. You were so understanding and caring, and you gave me courage to continue and not give up. THANK YOU for being there and still being here 🙂
You must be logged in to reply to this topic.