August 18, 2013 at 5:19 am #1792
I feel very happy to have found this site and all the information here and I am very much hoping to get some clarity about my treatment, after having been frustrated for quite some time now.
I am a 29 years old female, still feeling miserable after TT in February of this year and being on T4 medicine, and I am not sure if treatment is correct.
I was diagnosed with papillary follicular thyroid cancer (stage 1, microcarcinoma) in February. In the same month I had partial and them complete thyroidectomy, went hypo (without Thyrogen) and then had RAI in March. T4 (Euthyrox) therapy was started after RAI. I am treated for cancer by a radiologist in our national cancer center and by the supposedly best endocrinologist in the country. At first I was put on 75mcg of T4, that did not do anything to my TSH, it kept rising. By now I am on 175 mcg, with TSH still being at 13, so nowhere close to necessary cancer suppression dose, according to doctors, I am likely to be put on 200mcg after the next round of tests. My radiologist is shocked at this, as she thought I should have been OK with 100mcg dose, and in her experience the only person who had a similar dose of 175 mcg, was a 200kg heavy former firefighter, a male. I weigh around 65 kgs now. My endocrinologist thinks everything is happening normally. Radiologist believes in TSH and T4 as the golden standard, whereas endocrinologist orders free T3, Calcium and Phosphorus as well. There has been no mention of any T3 medicine, natural thyroid, or anything else outside of T4.
My latest results are the following (based on 150mcg of Euthyrox, after these the dose was raised to 175):
TSH – 13.1 [0.4 - 4.0 mU/L]
(was 69.9 a month before on 125mcg, 150 caused the first big jump)
Free T3 – 3.5 [2.8 -8.0 pmol/L]
Free T4 – 11.4 [10.3 -24.5 pmol/L]
TGB – 0.7 [0.0 -83.3 pmol/L]
Calcium 2.28 [2.10 - 2.60 mmol/L]
In previous results TGB antibodies were <20 [range: <50].
In my last neck ultrasound there were some remains of thyroid left after surgery.
Symptoms I am experiencing: sluggishness, major brain fog, inability to concentrate, larger need for sleep, depression/anxiety, low libido, poly-cystic ovaries, irregular periods (this I’ve had almost forever), acne, facial hair. Mental symptoms are not getting any better with dose adjustments and I am currently at my wits end, as I cannot properly work, I lack motivation for anything, and my relationships are affected.
A side issue for me is a pituitary adenoma, currently on its way to disappearing completely, from almost 10mm in 2009, to less than 2mm in 2013. My prolactine levels were up, therefore it was assumed to be prolactinoma, treated with Dostinex. Prolactine is now within the norm.
I would be extremely grateful to get any feedback on this. I am starting to think I am imagining all the symptoms, because my doctors keep saying that my T4 and T3 are within the range now and I should not be experiencing any of them, that I am fine and should see a therapist (which I have been doing and it doesn’t help much).
I am being treated in Latvia, but I actually live in Germany, considering switching over to a medical team here. Does it seem like I could benefit from that?
Sorry about the very long post and my non-native English.
AumaAugust 18, 2013 at 5:24 am #1793
Sorry, I noticed a mistake: By now I am on 175 mcg, with TSH still being at 13, so nowhere close to necessary cancer suppression dose, according to doctors, I am likely to be put on 200mcg after the next round of tests. Correction: TSH 13 is based on 150 dose, not 175, I haven’t had the latest tests for 175 yet.August 18, 2013 at 8:22 am #1794
Obviously you are hypothyroid, and your English is very good.
I know about brain-fog and “perfect” test results. Been there and done that.
Read thru all the stuff on the left side of the page. It is vital.
Your doctors are at least 20 years behind on reading relevant research journals.
Myself, and many others have found that the single synthetic hormone does not replace everything a healthy thyroid produces. Adding T3 would certainly improve you brain-fog, likely within an hour or so, but if you can get the natural product (Schilddruesen-Extrakt, generic Thyroid-USP sold under several trade-names, like Nature-Throid, Armour and others) that has been around for over 80 years you will do better. I wish I had started earlier on this. I know of one pharmacy in the UK (search for pharmacy2u) that can get this, and two in BRD, Receptura.de, and kloesterl-apotheke.de. There are probably others. Check “dearthyroid” for local support.August 18, 2013 at 9:17 am #1795
Thank you very much for the feedback. I am aware that I have a whole bunch of hypo symptoms, I guess I just have to figure out where to find a doctor who looks at them instead of the numbers. I signed up for a local European group, hoping to get some information there as well.
I have been reading the materials quite a bit already, found new information, e.g., I did not know about reverse T3, saliva cortisol and some other tests before. If I cannot get my doctors to run them (even in Germany), I wonder if those “online” labs are a way to find out more. Has anyone here ever used them?August 20, 2013 at 4:34 pm #1797
The concept of “basal body temp” was designed to find out if you are hypothyroid.
Look it up.
Once you have established that you are hypothyroid, setting the dose by lab results is a wasted effort. How much T4 and T3 a healthy thyroid produces should be guide to hormone replacement. In practice most get enough hormone replacement just short of hyper. The TSH may typically be suppressed then. The thyroid hormones action is intracellular, and that is “never” tested, so the circulating hormone levels are ambiguous. The hormones are not diffused in a strict ratio-metric fashion, but pumped in via special receptors on the cell surface.
As most medical practitioners stay with old science, old habits, and “accepted guidelines”, finding one may be hard. I have previously suggested checking the pharmacy who carries natural thyroid medication who prescribes this to find a reasonable medical practitioner.
Read everything on the left side of this page, and take note of all the references.
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