Strange things going on...

[durlstonage]

Hi, I am Male in my late 30s with hypothyroidism. About 2 months ago, I took half 100mcg iso normal 100mcg Levothyroxine, After a few days my hands and feet were cold, I got constipation, blurred vision, awake dreams, then I took 100mcg again, the symptoms are still there and I only feel better in the evening! I take my tablet upon waking about 5:30am each morning. The reason I took half a tablet was because of insomnia and heart palpitations during sleep time. My sleep is allot better now but the head/body symptoms still remain. I am very concerned what is going on and I really, really appreciate any feedback given! Thank you kindly xx

[milesrf]

You might ask your doctor to read something on the relation of various thyroid conditions.

Deiodinases
http://nahypothyroidism.org/deiodinases/
Not very easy to follow.

[durlstonage]

Wow! I didn't expect this guys, truly you have been absolutely great with the advise thing and everything.....These past few days i've been going through the psychological symptoms i.e lucid dreaming, random laughter, bizarre knee jerk reactions...Gimel, Ozzy1000, Barb135, I keep you updated as to what the Dr can do for me and if I get a cold return then i'm back to you guys to explain the reasons....

Thanks soo much all.

Durlstonage XX

[gimel]

Proper advice would be to start with a low dosage of T3 and adjust very slowly until symptoms are relieved.  You really can't determine proper dosage from blood tests only.  

Have a look at this letter written by a good thyroid doctor for patients that he sometimes consults with from a distance.  The letter is sent to the PCP of the patient to help guide treatment.  

http://hormonerestoration.com/files/ThyroidPMD.pdf

Please note this statement.  "The ultimate criterion for dose adjustment must always be the clinical response. I have prescribed natural dessicated thyroid for your patient (Armour or Nature-Throid). These contain T4 and T3 (40mcg and 9mcg respectively per 60mg). They are more effective than T4 therapy for most patients. Since they provide more T3 than the thyroid gland produces, the well-replaced patient’s free T4 will be around the middle of its range or lower, and the FT3 will be high-“normal” or slightly high before the AM dose."

[ozzy1000]

I haven't got time to read this whole thread now.. need to get off... but I just wanted to say "I feel your pain brother!!" (in a sort of cheessy ironic way)... I live in the south west and have been struggling with NHS treatment for a few year now... I have been on t4 only treatment, my GP has got frustrated by me and refer me to endochronoglists, they made half hearted t4 only (or vitamin supplement) reccomendations then sent me back to my gp... I've gone around in circles and then when i have prusuaded my gp to give me T3 there's simply not the support to make it work properly (they'll only let me have a blood test every 6 wks and T3 only comes in 20mcgs... and my gp has no idea how to dose it... so it just all goes wrong)......

also..... i think i was hypo for ages prior to diagnosis, and like you couldn't really tolerate any thyroid hormones at first... i had to start on half the smallest t4 tablets available for a week, then build up other wise i'd get palpitations.... I think its akin to flooring a car in first then trying to change into 4th, the engine has all this momentum that takes a bit of time to slow down to make the change smooth.... your (and mine) body was probably doing its damndest to compensate for low thyroid for ages, so that when it did have some you're left feeling over rev'd...

all the best, hang in there!! i'm sure we'll get it all sort in the end....

p.s. if you find a genuinely good private dr let me know, I'd pay to get some proper advice!!

O

[gimel]

Why not be your own advocate.  You would be the best at that.  We'll give you any info you need, and then you give the doctor copies and tell then you have done your research and tell them what you need.  We'll help.

[durlstonage]

Hi Gimel, Barb135, Thanks for your replies.
NHS budget is so tight that anything above T4 treatment is down to blood test results and the patients symptoms, the Dr will either reduce or increase the dosage of T4 to achieve the maximum benefit. If I had an advocate to work with me then maybe this will create a seismic effect and bring forth better care.

[gimel]

Did you see the doctor and give him the info I gave you above and follow the suggestion of one of your fellow UK members?  

"What I have learned from my experience is that you have to go to the Dr's office and TELL THEM WHAT YOU WANT and to go backed up with knowledge.  You have to tell them that you have done your reading and looked into your condition and care about the long-term treatment of your health and thyroid.  If you fight for what you want, you will eventually find someone that is happy to go along with your wishes.  But we all have to take charge of our own health, right?"

This approach has worked for several UK members.

[Barb135]

The T4 medication is not "fake"; it's identical to what your body produces.  It's not the medication; it's the fact that your doctor can't/won't do the proper testing and/or provide the proper treatment.  It seems that the only way you will get proper treatment is to go outside the NHS and pay privately, if you can afford it.  That's what a lot of our members from UK have had to do.

[durlstonage]

It is helpless, There is not allot I can do based on current NHS guidelines for hypothyroid patients, there is however a petition in process seeking further investigation into the singular T4 therapy being insufficient and what else could be done to alleviate symptoms and improve wellbeing. I wish I never started the fake thyroxine!

[durlstonage]

Thank you very much Gimel, It means allot. I will make an appointment and show the doctor the documents you have kindly made avail to me.
Best wishes,
Durlstonage

[gimel]

From our members' experiences with the NHS, I'm sure that your doctor is treating you based on TSH testing.  This simply doesn't work.  Make a copy of Figure 2, in this link and show the doctor just how poorly TSH correlates with either Free T3 or Free T4.

http://www.clinchem.org/cgi/reprint/55/7/1380.pdf

Then give him a copy of this link that statistically validates that Free T3 correlated best with hypo symptoms, while Free T4 and TSH did not correlate at all.  

http://www.ingentaconnect.com/content/routledg/cjne/2000/00000010/00000002/art00002

Then you might give him a copy of this list of 26 typical hypo symptoms, marked up with those that you still have, even with the T4 med dosage you are currently taking.  

http://endocrine-system.emedtv.com/hypothyroidism/hypothyroidism-symptoms-and-signs.html

I suggest all this because one of your fellow UK members told me this was the only way she ever was finally able to get properly treated.

"What I have learned from my experience is that you have to go to the Dr's office and TELL THEM WHAT YOU WANT and to go backed up with knowledge.  You have to tell them that you have done your reading and looked into your condition and care about the long-term treatment of your health and thyroid.  If you fight for what you want, you will eventually find someone that is happy to go along with your wishes.  But we all have to take charge of our own health, right?"

Then tell the doctor that WHAT YOU NEED is to be treated clinically by testing and adjusting Free T3 and Free T4, as necessary to relieve symptoms, without being constrained by resultant TSH levels.  To support this, give him a copy of this letter written by a good thyroid doctor.

http://hormonerestoration.com/files/ThyroidPMD.pdf

[durlstonage]

Hi Barb, Thanks for your post, Yes, South of England, if one can afford it then private consultation is possible. 49% of NHS will provide private healthcare in due course then I'm sure it will go 100% and National Insurance payments will contribute to Health Insurance, it will be tariff based, Standard, Premium and Premier, more you put in the more care avail to you...just my thoughts on the matter Barb (:

[Barb135]

Are you by any chance in UK?  The reason I ask is because we often see patients from UK having a hard time getting proper treatment, due to the NHS regulations.  

[durlstonage]

Hi Gimel, Thanks for yr invaluable post! I started 100mcg around May 2010 after stepping up gradually, I had different brands of Levo, I prefered Teva, OK, so for a few months things were ok, then my sleep was bad, I had heart palpitations, then trialed half a tablet w/o Drs advice, then switched back after adverse effects.
I ask to see an endo specialist however given a flat no and was unnecessary, oh hell! I am not affluent to pay privately, so I think insisting tactics will have to play.
Thanks again!

[gimel]

Please correct me if I am wrong, but as I understand it you had some reaction to the med when you first started taking the Levo, right?  Now you seem to have acclimated to the med and are no longer having the palps and sleep problems, but still do have the other hypo symptoms of cold, etc.  Is that also correct?  

If my assumptions are correct then I think that your body reacted to the meds either due to the starting dosage or due to you having been hypo for a while and having to acclimate to the thyroid hormone.  This is not unusual.  Many of our members have reported similar reactions when starting thyroid meds.  Now that you have gone through that, you need to give yourself time for the T4 med to build up to the final effect on blood levels.  This takes about 4 weeks to get over 90% of final effect.  Also, symptom changes tend to lag behind changes in blood levels of thyroid hormones.  The length of time is dependent on the degree of being hypo and the length of time being untreated.

So the thing to keep in mind as you go forward is to make changes slowly and give them time to have full effect before another change.  Slow and steady is the best approach to being successful in med changes.  

Another thing to keep in mind is that a good thyroid doctor will treat a hypo patient clinically by testing and treating Free T3 and Free T4 (not the same as Total T3 and T4), as necessary to relieve symptoms, without being constrained by resultant TSH levels.  Symptom relief should be all important, not just test results.  You can get some good insight into clinical treatment from this letter written by a good thyroid doctor for those patients that he consults with from a distance.  The letter is sent to the PCP of the patient to help guide treatment.  

http://hormonerestoration.com/files/ThyroidPMD.pdf

If you haven't been tested for Free T3 and Free T4, then you should request those tests and if the doctor makes excuses that they are not necessary, just insist on it and don't take no for an answer.  Also it would be a good idea to find out if the doctor is going to be willing to treat you clinically as I described.  If not you are going to have to find a doctor that will do so.