TSH...symptoms not numbers

[Jules82566]

I am not quite sure where to start...I was diagnosed with hashimoto's over 2 years ago.  Its been an uphill battle to get me to the point I am at right now.  My Levo doses have been up and down so many times,  I can't count.  I finally convinced my (3rd) endo to put me on Cytomel.  Cytomel has been my savior!  When I started the Cytomel, I was on 112 mcg of Levothyroxine.  In order for her to agree to the Cytomel to begin with, she wanted to reduce the Levo.  Fine and dandy! I have went from 112 mcg ( not all at the same time) to now being on 50 mcg of Levo and 15 mcg of Cytomel.  I feel like a MILLION bucks! Unfortunately, the Endo decided she wanted to decrease my Levo to alternating 25 mcg and 50, every other day.  I went into a downward spiral and all the symptoms I've fought so hard to get rid of, have all came back.  I relayed this to my endo who said that because my TSH is .01 she will not be able to go back to the straight 50 mcg.  She believes that this will cause osteoporosis and heart arrhythmia.  While I realize that it probably isn't good to have a TSH that low, I can't help but think of how incredibly great I was feeling until this Levo decrease.  

Does anyone else have a TSH in the .01 range and if so, does your dr. voice concerns about health issues relating to it Also, does anyone have any links to articles that I might show the endo to enforce what I've been telling her all along?

Oh and by the way, my Free T3 & Free T4 are (perfectly) in range and have been so since I was put on the Cytomel.

[Barb135]

Jules82566 is no longer active on the forum, so it's unlikely that you will get a response from her.  

What's the reference range for the FT4? Reference ranges vary lab to lab and have to come from your own report.  

What is the actual FT3 result as listed on your report, along with the reference range?

It's very possible that you are over medicated, since your doctor started you out on a HUGE dose, following your thyroidectomy... It takes 4-6 weeks for the medication to reach full potential  in your blood and since you've been on it for 8 weeks, this is about the time symptoms of over medication would be hitting you...

We'll be able to tell more once we see the rest of your labs and reference ranges.

[tkmama]

I had total thyriodectomy 8 weeks ago and I was placed on 150umg of levothyriocine. I was ok for sometime but beginning to have excess sweet and feel tired and weak after little work. my doctor sent me for thyroid function test and the result should 26.2 f4 and 0.053 tsh.  F3 is with the normal range. pls what does this implies? ,Atinuke.

[Jules82566]

You are VERY lucky as a doc who listens can be a rarity.  After several different doctors on my end, I've finally found one who agrees that if I'm feeling great, leave it alone.  I'm happy that you have someone like that, congrats!

[Guppy70]

Thank you Jules, I wish you the best of luck too! (c:

[Totie]

I am lucky that my new doctor (As of 2014) goes by how I feel and not TSH levels. My TSH is .04 with a high T4.

My doctor said as long as I feel fine no sense in trying to fix what is not broke:)

Now he has warned me of the heart issues and osteo...but allows me to make the choice .

[Jules82566]

It can be VERY frustrating, especially when "we" know when we finally feel like our old selves.  I have an appt with a holistic dr on Monday and today my endo emailed me asking me if I'd be open to reducing my Cytomel and she would then, let me have the 50 mcg of Levo back.  I really hate to mess with a good thing so I think I'm going to stall the Endo until I speak with the holistic guy on Monday.  I don't get it either...had the Endo came to me with that offer in the beginning, I might have considered it.  I believe she has a case of the God complex.  I wish you best of luck with getting them to listen and feeling optimal!

[Guppy70]

Jules, I have the very same! My latest test came back with a tsh of 0.1 and the Ts finally in a pretty good level within the range. I was on 88 mcg of Levo, but my endo decreased it to 50 mcg saying I was hyper. I was finally starting to feel human after being very hypo.

Just after a few days on 50 mcg Levo my face swelled up, my under eye bags came back, my head felt like mush and I became lethargic, so much I can't o anything else but to lay on the couch all day.

I called her and said I feel like crap again and begged to up my dose, so then I was put on 75 mcg. I'm now feeling better again, but I haven't found my "sweet spot". I'm thinking my Ts can't be optimal, I'm going in for yet another thyroid panel in 2 weeks. I can't understand what these professional got taught in medschool? Is it really the tsh that causes osteoporosis and all other hyper related woes, I thought it was directly linked to the actual thyroid hormones?

Thank you gimel for posting those links, I will present them to my endo.

[Jules82566]

I know that I FINALLY felt like a million bucks and she decided to take that away, over one number.  I've decided to pay $300 out of my pocket and go to a holistic MD.  But...I am  not done with her.  I am going to get this info that you sent me, to her so she doesn't do to someone else what she has done to me.  Thanks so much for your time and input!

[gimel]

Unfortunately you have fallen prey to the "Immaculate TSH Belief' by which many doctors, and especially Endos, will tell you that TSH is basically all they need to diagnose and treat a hypothyroid patient.  That is very wrong.  
Although TSH is supposed to accurately reflect the thyroid status of a patient, TSH cannot be shown to correlate well with either of the biologically active thyroid hormones, Free T3 or Free T4, much less correlate with symptoms, which should be the main concern.  

In this link you can see just how poorly TSH correlates with Free T3 and Free T4.  If the correlation was good you could take a TSH level and predict what the Free T3 or Free T4 would be.  Clearly that is impossible because the correlation is so poor.  So what is it that TSH is supposed to reveal?  Not very much if you look at fig. 2 in the following link and also read through the additional links.

http://www.clinchem.org/content/55/7/1380.full

In addition, it is quite common for TSH to become suppressed when taking enough thyroid medication to become euthyroid clinically.  That does not mean you have become hyper, unless you do have hyper symptoms due to
excessive levels of Free T3 and Free T4/  But if FT3 and FT4 are within range, how can a doctor claim you are hyper based on TSH, which doesn't correlate with either FT3 or FT4 or symptoms.


http://www.ncbi.nlm.nih.gov/pubmed/3687325

"We found no correlations between the different parameters of target tissues and serum TSH. Our findings are in accordance with a cross sectional study showing only a modest correlation between TSH and the percentage of positive hypothyroid symptoms4 "


http://www.bmj.com/content/326/7384/311

"As a single test, serum TSH is therefore not very useful for the assessment of adequate thyroxine dosage in patients with primary hypothyroidism."

http://www.bmj.com/content/293/6550/808

T"o establish their role in monitoring patients receiving thyroxine replacement biochemical tests of thyroid function were performed in 148 hypothyroid patients studied prospectively. Measurements of serum concentrations of total thyroxine, analogue free thyroxine, total triiodothyronine, analogue free triiodothyronine, and thyroid stimulating hormone, made with a sensitive immunoradiometric assay, did not, except in patients with gross abnormalities, distinguish euthyroid patients from those who were receiving inadequate or excessive replacement. These measurements are therefore of little, if any, value in monitoring patients receiving thyroxine replacement."

http://www.ncbi.nlm.nih.gov/pubmed/1366242

"When TSH was suppressed, FT4 was elevated in 30.4% but normal in 69.6% of patients."

http://www.ncbi.nlm.nih.gov/pubmed/16269872

"LT4 therapy was given at a dose sufficient to reduce TSH under the lower limit of the normal range (0.27-4.20 microIU/ml) without suppressing it below the limit of assay sensitivity (0.005 microIU/ml) and maintaining normal serum values of free triiodothyronine (FT3) and free thyroxine (FT4). "

"This study suggests that at slightly suppressing TSH doses, LT4 therapy has no adverse effects on BMD in both pre- and postmenopausal women, while having an efficacy on nodule size comparable with that reported using an LT4 schedule able to maintain TSH near or below the assay sensitivity limit."
  
http://www.ncbi.nlm.nih.gov/pubmed/8252740

CONCLUSION:  In this patient population, the reduction in bone mineral density due to thyroxine is small. It is unlikely to be of clinical significance and should not on its own be an indication for reduction of thyroxine dose in patients who are clinically euthyroid."



From just a logical viewpoint, how is it that the absence of TSH is supposed to cause bone loss?  Note in the following link the statement,
"Excessive thyroid dosing causes many negative symptoms, and such patients do not feel well. I suggest lowering the dose in any patient who h
as developed insomnia, shakiness, irritability,palpitations, overheating, etc.. Atrial fibrillation can unfortunately occur in susceptible patients
with any increase in their thyroid levels. It should not recur if the dose is kept lower than their threshold. Thyroid hormone does not cause bone loss, it simply increases metabolism and therefore the rate of the current bone formation or loss. Most older women are losing bone due to
their combined sex steroid, DHEA, Vitamin D, a nd growth hormone deficiencies. The solution is not life-long hypothyroidism, but the correction of their other deficiencies."

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

Just for info I have had a TSH of about .05 or less for well over 25 years without having hyper symptoms.  And there are other members with similar stories.