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Good bloods on Levothyroxine, still feel awful, would desiccated improve my symptoms?

by CindyCB1978, Nov 08, 2009 01:43PM
Hey all in the thyroid disease forum - getting the hang of these boards now :)

I have Hashimoto's Disease which has left me hypothyroid - have been on levothyroxine (synthroid) for just over 6 months now and while some things have improved to a degree others haven't, most especially my terrible brain fog and fatigue.

It's like there is a sheet of glass between me and the 'real world' all the time. I can talk and type on automatic pilot very often (which confuses my husband no end!). I struggle very hard with getting out of bed and 'getting going' in the day, usually takes me about 3 hours.

I know a lot about thyroid disease as I have probably spent most of 2009 attached to my computer, researching, but it's not getting me very far.

My last bloods were:

TSH - 0.04 (range 0.3 - 4.2)
free T4 - 22.5 (range 12 - 22)
free T3 - 6.2 (range 3.1 - 6.8)

So a good looking set of bloods in general - I am on 100mcg levothyroxine currently, I tried slightly less in case I had gone hyper but this quickly proved to be too little so I went back up to 100mcg.

I am just about to embark on switching over to desiccated thyroid to see if this helps things any as I am reluctant to increase the thyroxine any further as I am already experiencing a 'pounding heart' - it's not racing but it feels quite 'hard' in my chest.

Any advice would be super as I am not sure the switch is entirely worth the hassle.

Thank you in advance.

CindyCB1978
Member Comments (10)

by LazyMoose, Nov 08, 2009 01:57PM
Well, as you may know, dessicated is hard to find the last couple of months-shortage. So, wait a while if you want to switch. 6 months is not that long on synthroid. I was on it for ten years and said enough is enough. Dessicated helped me with some things. They say orders might go out this month, were waiting!

3 hours to get going may or may not be from hypothyroid. Could be a sleep disorder on its own or hypo related, I never slept well. Still dont.

I had slight heart palps from Armour for 5 months but seem very rare now. I think the heart takes a while to get used to a new med. The more dessicated I take the less palps I have and my BP is now excellent again 100-115 over 60-70 range! Seems backwards, but were all different - remember that.

Look up posts on the vitamins and supps hypos need, can be crucial for some.

LM

by gimel, Nov 08, 2009 02:15PM
To: CindyCB1978
I agree that yours is a good looking set of lab results.  I'm not sure that you are going to benefit from changing over to desiccated.  The purpose of that is usually to enable a patient to increase FT3 levels.  Yours already looks good.  So, rather than switching and possibly having to go through a period of having to do a lot of testing and adjusting dosage to get back to where your are now, I think I would wait and do some other investigating first.  


First, I don't know how long you have been at those levels, but you should be aware that symptoms lag blood levels of the thyroid hormones.  It has been reported that the longer you were hypo, the longer it takes for the body to mend and symptoms to subside.  

If this doesn't relate to you, then other considerations that come to mind include adrenal function, Vitamins D and B12 levels , and iron.  I'm sure that our experience members will suggest others.  

by CindyCB1978, Nov 08, 2009 02:47PM
Many thanks for the quick replies, much appreciated.

Well I know my B12 and iron levels are very good as this was something I addressed when I first started treating my thyroid. It's been a bumpy few months as my Hashimoto's flared up very badly over the Summer and sent my levels too far up, then they crashed back down (and below where I started).

I appreciate everything with the thyroid is a fairly slow process but even my thyroid specialist (one of the best in the UK) is confused that my brain fog is still so bad - also the weird thing is I am actually more dizzy since starting thyroid replacement and also far less inclined to go out of the house.

I have a lot of symptoms that can't be explained (it seems) by thyroid disease alone, yet so far no one can tell me what does explain them!

I am inclined to think I have adrenal issues but I trialled prednisolone (2.5mg for 2 weeks, then 5mg for a further 2 weeks) and it made me feel even worse, spaced me out totally and gave me a horrible 'dragging feeling'.

I am going to try Nutri Adrenal Extra meds (similar to Iscort I believe) but am sort of doing it blindly.

It's all very confusing!

Thanks again,

CindyCB

by gimel, Nov 08, 2009 04:25PM
To: CindyCB1978
Could you please, for info purposes, give yourself the basal temperature test for several days?  Although inadequate as a diagnostic, by which to dose a patient, a low basal temperature test result is an acceptable indicator of low metabolism.  If interested, the basal temp test is taken in the armpit in the morning, before getting out of bed and moving around.  As such it represents the lowest temp of the body.  Dr. Broda Barnes found many years ago that basal temp below 97.8 degrees was an indicator of low metabolism.  The lower the temp below the 97.8 level, the more likely to have low metabolism. If this is the case, it might be helpful to know that, for further testing.  Also, you did not mention Vitamin D.  Have you been tested for that?

If you have the opportunity to do some reading about this area, here is a link.

http://www.drrind.com/therapies/metabolic-temperature-graph#directions

by CindyCB1978, Nov 10, 2009 04:16PM
To: gimel
Hey Gimel,

Thanks for the link, I think I may have seen it right back at the beginning of my thyrod research.

Haven't done my basal temp for a while but when I was recording it it was always on the low side.

Don't think I have had my vit D tested so far although had lots of other vits done.

The only thing I can come up with is either my bloods need to be even higher than this (which makes me very nervous as I already feel they are verging on fairly high) or that my adrenals are not up to the job of getting the hormone into where it's needed?

I had an adrenal saliva test a few months ago which showed they were in bad shape but I don't know how accurate these are?

And if this is the case then why did I have a bad reaction to the prednisolone?

So many questions, not many answers!

CindyCB.

by gimel, Nov 10, 2009 10:37PM
To: CindyCB1978
Don't have any idea about your question on reaction to prednisolone.  In view of your low basal temp I do think I would continue to find out about adrenal function and also do one further thyroid related test, for RT3, so that the FT3/RT3 ratio can be calculated.  And don't forget to check Vitamin D, since it is frequently affected by hypothyroidism.  

Sorry I have nothing more to suggest.  I am going to PM another member and ask for her review and input.

by stella5349, Nov 12, 2009 05:39AM
I think that FT4 test is HIGH - and you need to look at a RT3. Personally I think you are on a high dose of T4 meds.

Talking to your doctor about lowering the Levo and looking at a Cytomel maybe better. If you switch to a desiccated thyroid medication you will be lower in a T4 intake and will have direct active T3 off the desiccated, so tweeking (Lowering) what you are on now maybe to a .88  and adding a T3 like Cytomel may help instead of switching.

Your going to have to find your sweet spot with your medication. I think you are close and commend you on doing it this close on just a T4 medication. I really think tweeking her would be better than abruptly switching over and expecting the body to respond well right away. She may go backwards.

by stella5349, Nov 12, 2009 05:42AM
I think her body is in "process " mode with the high FT4. That needs to be backed off so the Ft3 can work right.

by BaysGrl23, Nov 12, 2009 03:32PM
To: All
I was just diagnosed with Hypothyroidism last week and prescribed levo. My TSH level was 31 and I was told it shouldn't be over 4.5 Since starting the medicine I have this awful heaviness in my chest that scares me a lot. I have had these pains in my chest and tiredness for 3 years and just found a doctor that thought to test my thyroid. I am just trying to get info. on what I should do about the heavy pain in my chest. My dose on the Levo is 50mcg. Is there a possibility it is to high. Just writing to get some info. on this from people who have already been there. Thank you.

by stella5349, Nov 13, 2009 04:56AM
I think if you are being medicated soley on the TSH then you are in a trial and error of medication. These meds need to be measured with the FT3 and FT4 labs more than TSH

To take the TSH you had of 31 ( which I think is 31.0) that is high - but it doesn't tell the whole thing on what your hormones are really doing.

This is not just a pill. This is actual synthetic hormones altering the body. Not looking at the Free T3 and Free T4 is wrong in my eyes.

A common symptom of wrong dosing can be shortness of breath - tightness in the chest. Thyroid hormones strongly correlate to the cardio system.
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