Good morning all! I haven't been here for a while. I am 5 months post RAI for grave's disease. My current dosage of medication is 137mcg levoxyl. My hair has been falling out like crazy! My endo says that it is completely unrelated to the medication, and that everything experienced due to the thyroid is completely reversible. I have fine hair anyways, so it's really worrisome to be losing so much hair. Is this going to taper off any time soon?
On another note...my endo only tests my FT4 levels to adjust the dosage of my medication. My last FT4 was 1.37 (range 0.8-1.5). He told me at my last visit that my level was beautiful, but I have been feeling a soreness in my joints (i'm 39) & especially my thumb...almost like carpal tunnel. I don't know if there is a doctor that treats thyroid patients based on both FT4 & FT3, but should I try to find one? I am feeling pretty good...a vast improvement in how I felt before treatment, but I just feel like I'm not quite there...
Thanks for your information & replies, it is a huge help!
Many hypothyroid patients taking significant dosages of T4 find that their body does not adequately convert the T4 to T3. This results in levels of Free T3 that are too low in the range, thus hypo symptoms. I was in that very situation for well over 25 years, while my doctor told me that my TSH and my FT4 levels were "normal". After finding this Forum and learning about the importance of Free T3, I finally got mine tested and confirmed as too low. Meds were then changed to a T4/T3 combo type. After some dosage tweaks, I now feel best ever, with my FT3 at 3.9 (range of 2.3 - 4.2) and my FT4 at .84 (range of .60 - 1.50). Many of our members also report that symptom relief for them required that FT3 was adjusted into the upper third of its range and FT4 adjusted to around the middle of its range.
A good thyroid doctor will treat a hypo patient clinically by testing and adjusting FT3 and FT4 as necessary to relieve symptoms, without being constrained by resultant TSH levels. Symptom relief should be all important, not just test results. I think you can get some good insight from 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.
Perhaps if you send a copy of this letter to your doctor and tell him that you are still having hypo symptoms and you need to be tested for Free T3, that might get through to him. You can also mention that there are scientific studies that show hypo symptoms correlated best with Free T3, while Free T4 and TSH did not correlate at all.
If he resists, then you should strongly insist on testing for Free T3. If that still doesn't work, then you will need to find a good thyroid doctor that will both test for FT3 and treat you clinically.
I found gimels post really useful :):) what Vits are you taking alot of my hair fell out after RAI you really need to take good Vits while you get your doses right :):) a really good multi Vit , Calcium & Vit D helped me also squeezing lemon in2 hot water , plenty water if you get a good multi Vit should have most thing in it , read the lable and pay about £12 for them make sure they contain everything
Thank you for your information & help. I am very restricted as to who to go to for treatment as there are only 2 endocrinologists within close proximity (60 miles) to my home. I know for certain that the doctor that I currently see would be resistant to anything printed from the internet or otherwise, because when I asked him about natural thyroid hormones initially, he said that that's all there used to be & it was very difficult to adjust a patients level with the dessicated thyroid. He said synthroid is highly effective and can be used to adjust people's levels very precisely. Based on the hours of time I have spent here browsing and reading these forums, I have found the same thing that MOST patients require some kind of T3 replacement to feel completely normal. I may check with my PCP and see if she would be willing to try to adjust my levels with both T4/T3 replacement. I have heard that there was some change with Armour so many Dr's aren't prescribing it anymore...what else is out there?
To A_G09: I am not currently taking any multivitamins because I am at a loss on what to take. I have researched some on multivitamins & it seems that there are a lot that have fillers added to them & they can be harmful to thyroid patients. I don't want to mess myself up even worse by taking something that would do more harm than good. I'll do some more checking though. How long did it take for your hair to stop falling out? Mines been going off and on now for almost 3 years. I'm surprised I actually have hair left on my head. =)
I also cannot find more than two Endos in Las Cruces. Why don't Endos like it there? LOL
Also, I wanted to point out that it doesn't have to be an Endo. They are usually very rigid in the "Immaculate TSH Belief" and also rely heavily on "Reference range Endocrinology", which usually leaves their patients with lingering hypo symptoms, like yourself. What you really need is a good thyroid doctor, as I defined for you above, along with a link to a letter written by a good thyroid doctor.
You might have some luck finding a good thyroid doctor by asking around among your friends. You also could ask your pharmacist if he knows of any doctors that prescribe Armour Thyroid or Nature-Throid. Those doctors are usually more understanding of the importance of Free T3 and how to treat.
Lacking any luck in those areas, you might have to try and influence your current doctor. For that I suggest that you give him a copy of this scientific study showing that Free T3 correlated best with hypo symptoms, and Free T4 and TSH did not correlate.
I would even mark up with highliter, the Summary, which follows.
With an improved understanding of thyroid physiology that includes the local control of intracellular activation and deactivation of thyroid hormones by deiodinases, it becomes clear that standard thyroid tests often do not reflect the thyroid status in the tissues of the body, other than the pituitary. This is especially true with physiologic and emotional stress, depression, dieting, obesity, leptin insulin resistance, diabetes, chronic fatigue syndrome and fibromyalgia, inflammation, autoimmune disease, or systemic illness. Consequently, it is inappropriate to rely on a normal or low TSH as an adequate or sensitive indicator of normal or low tissue levels of T3 in the presence of any such conditions, making the TSH a poor marker for the body’s overall thyroid level.
In order to be appropriately and thoroughly evaluated for thyroid dysfunction and obtain optimal treatment, it is important that patients find a thyroidologist who understands the limitations of standard thyroid testing and can clinically evaluate patients by taking an extensive inventory of potential signs and symptoms that may be due to low tissue thyroid levels despite normal standard thyroid tests. The free T3/reverse T3 ratio can be valuable in evaluating potential deiodinase dysregulation and measuring the speed of the relaxation phase of the muscle reflex, and the basal metabolic rate can also be helpful additions in the evaluation of tissue thyroid levels.
If you send these copies, along with a copy of the letter written by a good thyroid doctor, to your current doctor and ask to be tested for Free T3 and to be treated clinically, how can he continue to refuse?
Thank you gimel for your responses & very useful information!! I am going to start calling the pharmacies and see what other information I can find out there. It sure sounds like armed with all this information that he would not refuse to do the testing, but I feel that he'll think it's all quackery...that's what he called it when I asked him about natural thyroid hormones in the first place. But I will certainly try! Thank you again!!
Just thought I pass this on to you. In the UK they have an even harder time than we do in getting properly diagnosed and treated for hypothyroidism. One of our members from the UK, who was finally successful, told me that her success was because of this approach to her doctor.
"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?"
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