sandwich 03/01/17
Last reply 1 year ago
Any Thyroid experts on here?

My readings seem all over the place at the moment and I’m not getting much feedback from HCP. Could do with some help understanding the figures.

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potter
1 year ago

My thyroid numbers are all over the place high, low or normal, I went through a lot of scans and even went to the hospital for a biopsy. I didn’t have thyroid cancer but I did have a bouncy thyroid that can’t be treated. Potter


mmhhpp
1 year ago

Can i ask what is HCP? Which medication are you taken potter and sandwich?


imbarca
1 year ago

Hi @sandwich. Not an expert but have had plenty of experience having been diagnosed with Grave’s disease (overactive) in my 20s, which was successfully treated then Hashimoto’s (underactive) in my 30s post kids. Thyroid currently having another tantrum/overactive spell possibly related to Lem treatment last year. What do you want to know?


potter
1 year ago

I am not on any medication, there are different medications for high and low numbers since my numbers can swing both directions in one week there is no way to treat it. I asked the surgeon about removing my thyroid and he said I didn’t want to do that. I was gaining weight and losing my hair, he told me the weight would be hard to control but I could buy a wig. Real sympathetic. Potter


sandwich
1 year ago

HCP – health care professional.

Mine seems to be swinging all over the place at the mo. I’m on 50mg of levothyroxine (side effect from Lem) and have been stable on it for several months until recently.

In October my TSH went from normal to 0.06 with my Free T4 going from normal to 22. November’s were slightly worse with my TSH showing as 0.01 and my Free T4 showing as 26. December things have changed again showing my TSH at 16 (massive difference from 0.01) and the Free T4 at 9.

I know they are out but don’t really understand why or what it means. I emailed my nurse who told me to ask my GP to do a blood test before my normal one at the hospital later this month. I asked what the figures mean but she didn’t pass comment. My GP has not got back to me. I’m not worried in the grand scheme of things as frankly as long as the MS remains quiet my thyroid can do what is wants, I’d just like to have a better grasp of what the figures mean.


imbarca
1 year ago

@sandwich that is a massive swing. The TSH was pretty low in your October and November but your levels of t4 didn’t get too scary as 24 is the usual upper limit. I’m guessing you didn’t notice much symptomatically. Have you changed meds at all in that time? Th
As far as I know, the results were indicating that you were either overmedicated or you may have been experiencing thyrotoxicosis.

Thyrotoxicosis occurs in some people with Hashimoto’s (underactive thyroid due to autoimmune disease). So the person has an underactive thyroid most of the time that occasionally spontaneously flips into an overactive state. It usually reverts back after a few months without help. I have had it before and then found I needed to up my levothyroxine once it resolved as my levels dropped below where they were before the swing. I feel like my thyroid is having the occasional temper tantrum as it expires. ?

Not sure if this is what is happening to you, but your levels look really off now. If my TSH gets above about 3 I notice (even though the normal range is up to 4). If I was at your levels I’d be struggling to get out of bed and grumpy as hell, not to mention freezing cold. If your next lot of bloods look similar, I’d make an appointment to see your GP and talk about upping your levothyroxine. And if it keeps messing you about, maybe push for a referral to an endocrinologist?

I share your attitude, by the way. Thyroids can be removed/supplemented and generally whipped into shape. They only cause real problems when left unchecked. Sympathy for @potter, though. That sucks, as does the attitude of your doc. I wonder if it’s worth a second opinion (if that’s an option for you).


potter
1 year ago

When I was having the testing done I had seen three doctors and basically got the same opinion from them. I think my problem was caused by the DMT’s I have taken. When I was on Rebif I lost the last third of my eyebrows, that is a sign that your thyroid isn’t functioning right. I changed to Tecfidera and my eyebrows grew back so thick I needed to take a lawn mower to them. As long as my Tec is working I am just going to keep mowing my eyebrows and using Monoxidil on my bald spots. Potter


sandwich
1 year ago

@imbarca thank you that is helpful. I was tested for Hashimotos prior to starting treatment and the results were negative. It could have changed of course. Grumpy and struggling to get out of bed in the morning is normal for me so I cant say I’ve noticed anything different :-). I have been cold the last few weeks but the weather has dropped so it might not be linked. I’ve been tired but it turns out I had a uti for 3 months which no one thought to mention to me so I doubt that’s done me any favours.

I’ll keep you updated. Thanks once again.


troy
1 year ago

Hi Potter, does Monoxidil work? I had graves disease ( over active thyroid ) years ago & when the doctors couldn’t get it under control I took a radio active capsule & my hair fell out in clumps!! I was diagnosed with ms 2016 & take Tecfidera & my hair is falling out again!! I would try Monoxidil if I thought it might work for me. I told the consultant last time I was at the hospital & she said although its not one of the known side effects she would report it. I told her I had asked other people online if Tecfidera had effected their hair & had many responses saying yes!


potter
1 year ago

I have fine thin short hair in the bald patches so it kind of works, it never grows any longer than a couple of inches. I use the generic mans formula once a day, it has 5% Monoxidil in it the women’s has 2% and cost the same. Your suppose to use it twice a day but I get a rash if I do that. The once a day keeps the hair I have grown from falling out. It would probably work better for a men because of the shorter hair styles. Potter


troy
1 year ago

Hi Potter, thanks for your response. I did wonder what the difference was with the men’s/women’s. I have fine shoulder length hair & bald patches right at the front & use a spray called Mane to try & cover them up. So I’ll def give Monoxidil a try …………fingers crossed!!Regards Troy.


sandwich
1 year ago

More crazy figures. My tsh is now 81.8 and my free t4 is 6.4. Behave thyroid!

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