hypothyroid nightmare

[gizzykitty]

I have been hypo since i was 16yrs old. I was was diagnosed with the auto immune disease and nodules. Scans showed nothing bad but when i was 21 they removed the thyroid found papillary carcinoma and one tumor on near by lymphnode. Even though parathyroids were intact they died off leaving me with one more problem. Currently i am 33 i was switched to levothyroxine from levoxyl. Anyways long long story short i have problems getting regulated when they increase my dose my heart feels like its pounding out of my chest. My body temperature is elevated ecspecially in the morning when i wake up. I sometimes feel i have a sunburn on my face and stranger i was having trouble swallowing my food. Which doctors chalked up to being psychological.lol yes i feel crazy but not in the head, but my body doesn't want to function properly and i feel like my head is floating.. i just recently increased my dose by 12mcg i am on 175mcg now my last tsh was 21 which was about 3 1/2 ago i was on 150mcg's at that time. The doctor wants to increase me to 236mcg's which i am sure is way to much for me since i react very sensitive to the meds and hence the 12mcg increases. Has anyone had this same problems and would anyone know what to do to ease this discomfort?

[gizzykitty]

Thank you for your response and yes I will look the link up. I am also in the process of doing research as to when they switched me from levoxyl to the levo to see if that is about when some of the odd symptoms started. I have been hypo for a very long time so I have been rounds with doctors with this. But I have read the forums and it really does make you feel better to know that you aren't having some terrible reaction that no one in the whole world has experienced and so therefore it must all be in our heads. lol I love when they try to tell me that. I tell them that no I DON'T FEEL GOOD... no one could expect to be happy and perky all the time when they feel like death every day. But sadly enough I have been  hypo for so long that I feel better being slightly underactive rather then being in the so called normal ranges they say. And for once my physician realized that and said that she would work with me but it does not seem that she knows what that will require. I have been to several endo's and I really don't like the way they are in response to me. They don't know me or my life and they need to treat me as an individual and not as a group as we are all different and require different amount of hormones in our bodies for us to function.

[gimel]

I think you will get some good info from this link.  Maybe you should give a copy to your doctor and point out the tests that need to be done.

http://nahypothyroidism.org/is-your-thyroid-making-you-fat/

If you have the time I also suggest that you have a look at this link.  It is a bit long to listen to, but has even more good info on this subject.  

http://nahypothyroidism.org/is-your-thyroid-making-you-fat-with-mary-shomon-and-kent-holtorf-md/

[gizzykitty]

My thyroid was 21 about 3 1/2 weeks ago. Sorry was on my phone when I was typing that and sometimes it misses things that I type. I have read alot over the years on the medication and I guess you could say that I take a very passive role with the doctors. I have been told by one endo that I am eating too much and that is why I gain weight rather the real truth was I was hardly eating and still would gain weight. I have had so many ups and downs and everytime I point out something else they just want to throw you on a mind altering medication. I guess it is time to grow some balls cause at this point I believe I have only seen one blood test that they even checked my FT4 and FT3 and that was so long ago. Also when I approached the doctor with the thought that my adrenals could be in distress I was told that I do not have that problem based on the way I look and my symptoms. However looking through every bit of information I have looked at I have plenty symptoms of this. But in the end they just think that I am being a hypochondriac and want to give me anxiety meds and send me on my way. I have had this disease since I was very young I have lived with this for a long time and I feel like unless the doctor has the condition then they will never know what we go through with this. But thank you for listening to my rant.lol I appreciate your answer and once I go and request the blood work that I think that I need I will post those results.

[Barb135]

If you read over past posts, you'll find that most of us on the forum are very familiar with Dr K's book and protocol, and don't think much of either.

What are the actual levels of your FT3 and FT4? TSH is a pituitary hormone and is not indicative of actual thyroid levels.  Please be sure to include reference ranges, with any test results, as ranges vary lab to lab and must come from your own report.

It takes, at least, 4-6 weeks for a dosage change to take effect, so if you are reacting after the second dose, it would more likely be to the fillers/binders in the pills than the levo.  You might try getting your med from a different manufacturer, or going to a name brand.  

"my last tsh was 21 which was about 3 1/2 ago".  3 1/2 what ago?  

[flyingfool]

Another alternative may be to reduce the T4 and add some T3, or switch to natural dissected thyroid medication like Armour.

[flyingfool]

You could actually be having sensitivities not to the thyroid but to the fillers and buffers in the pills themselves.  You may want to try switching manufacturers as each one of the generic manufacturers uses different fillers, buffers and dyes.

Another option may be to go with Tirosint as it is a liquid gelcap. Thus it has not fillers and dyes etc and is also T4 medication.  Being a liquid gelcap, its absorption many people report is higher. Thus you may absorb more T4 with Titrosint than with the powdered pills and thus may need a slightly smaller mcg dose than equivalent powdered pill like Levo.

Worth a try to go with name brand Synthroid as 1st try to see if it is potentially some sensitivity to the buffers in what you are taking now.

[gizzykitty]

Yeah that is possible... i react very bad when they try to increase my meds. I will not be able to relax and calm down and the 2nd day of a dose increase i get short of breath like i am running a marathon but i am standing still. This has all been a very long journey to find some kind of normal. I work for a doctors office full of different types of physicians so i just want to offer some insight as to what i have been told. Look up thyroid360 on the web he wrote a book called why do i still have low thyroid symptoms when my labs are normal. He mentored one of the physicians i work for and it actually is very good information... now i just need to follow the information.lol

[FTB4]

From personal experience, I did not do well at all on Levothyroxine, my labs remained the same for six months on Levo, no improvement. When my Endo switched me to Synthroid, My levels all improved although not to an optimal level, this was due to a conversion issue, I am now on Armour and as far as the thyroid issues are concerned I am doing fine. My Endo said Levothyroxine was inconsistant compared to Synthroid, other MD's say there is no difference, in my case there was. Good Luck FTB4