FEELING DEFEATED, AM I REALLY OVERMEDICATED???

[Rosebud1955]

Hi everyone, I have only posted a couple of times, not very savvy, so I mainly read posts by others and have learned so much. Just a refresher: had TTT August 2017 for papillary ca. Started out on 125 mcg synthroid, taken @ 6am, following all the suggestions of the valuable people on this site. Four weeks after surgery I saw an Endo who immediately looked at my suppressed tsh (0.05) and dropped my fuse to 112 mcg. That’s when all hell broke loose, went down hill, never been well since. Put on 11 lbs since surgery ( looks 6 months pregnant) Endo seems to be worried about my age (64years old) he started to scare me about osteoporosis and cardiac issues. I finally got him to order t3 5mcg twice daily along with the 100mcg t4, nothing has worked, still gaining weight, fatigue, hair loss. Recently I decided to take the 110mcg all at once with the t4, I was having difficulty coordinating my supplements. I have chronic Lyme disease, that doesn’t help. A month ago I started having severe head pressure, pressure in my ear drums and a series if scary high blood pressure ( 130/110) before my thyroid journey, I had low blood pressure. I had a follow up with the surgeon today, he also tried to scare me about thyrotoxicosis. I’m totally confused, frustrated and depressed about the whole situation. The surgeon told me that the head pressure is due to the suppressed tsh. I don’t see the Endo until August so i’m stuck. I ‘m considering coming off the Cytomel for 3 days to see if the head pressure subsides. I will take 125 mcg synthroid and see if that helps until I see the endo. I have list all trust in doctors, they don’t seem to care about their patients, just how many patients they can see in a given day. I would appreciate any advice/suggestions. I’m desparate. I have no support at home. Married and living with a cheating husband, very lonely, also have other health issues. Just have the second back surgery in two years. Below are my recent labs: tsh:<0.05 (0.35-4.94), Ft3: 3.5 (2.6-5.7), Ft4: 12 (9-19) anti thyroglobulin <20 (range<114), thyroglobulin <0.01 ( range<54). My vitamins and minerals are optional, I supplement b12, vit D, magnesium glycinate, I eat clean and healthy, gluten and dairy free. Any help will be appreciated. Sorry for the long post, i’m desparate.

Thanks

much

[greygoose]

Suppressed TSH does not cause head pressure, nor osteoporosis, not heart problems. TSH only does what it says on the packet: Thyroid Stimulating Hormone. It does have a role to play in conversion, but it has nothing to do with hearts or heads or bones. And it doesn't cause symptoms whether it's high or low. It's just an indicator of thyroid status - and a pretty bad one, at that!

The problem is, doctors have been very badly educated in thyroid. Therefore they know virtually nothing about it. But, as what they learnt in med school is sacred to them, they believe they know it all. The result is millions of mistreated, suffering patients.

What were you taking when those latest labs were done? Because, despite your TSH, you are under-medicated. Both your Frees are well below mid-range. And being under-medicated is far more dangerous for your heart and bones. Did you have labs done before the TT? Do you know what your levels were then?

[Rosebud1955 in reply to greygoose]

Sorry greygoose, I was suffering and struggling to get a diagnosis, totally ignorant, I did not even look at the results. Although I had bad symptoms, I was told my labs were normal. I only got smart since I joined this forum. The labs were done June 26, fasting etc. I was taking 100mcg synthroid & 10 mcg Cytomel. I saw a cardiologist when my blood pressure got high, I had a type error, blood pressure was 220/110, very scary. The cardiologist thinks there might be a pituitary/ hypothalamus issue.

Thanks for your prompt reply.

[Greekchick in reply to Rosebud1955]

Hi there Rosebud,

Sounds like you are having a rough time. If your surgeon thinks it’s possibly a pituitary problem and you have headaches, I wonder if a head CT is in order. Not to upset you more than you already are, but my husband had a pituitary tumor with similar symptoms and it may be worth asking about.

I wish you all the best and hope you get a resolution to your peinmel soon. Sending you positive thoughts tonight.

[Rosebud1955 in reply to Greekchick]

Hi Greekchick, thanks for your suggestions. I had a CT scan earlier this year, results were negative for medical issues. I have Chronic Lyme disease and was told by my Lyme Disease specialist that head pressure is very often associated with some of the infections that accompany Lyme. I’m due to resume my Lyme treatments this coming week, so i’ll see him that goes.

Thanks.

[Greekchick in reply to Rosebud1955]

I’m glad that you have at least that question answered and you have had the CT scan already. Wishing you all the best and feel better soon.

[Rosebud1955 in reply to Greekchick]

Thanks

[greygoose in reply to Rosebud1955]

Yes, I agree with Greekchick , this head pressure does need separate investigation. It is utterly stupid to just assume it is due to the suppressed TSH. That is sloppy doctoring and totally illogical. If you have a pituitary problem, they could both be as a result of that. A concept too far for the limited thinking of most doctors. And low TSH certainly would not affect your blood pressure - high FT3 might, but yours is very low.

You could do with an increase in T3. Which would make you feel a little better. But most important to get a head scan, to see what's going on. Don't let them fob you off with the low TSH rubbish again.

As to your results before your op, they should be on your records. If you live in the UK, it is your legal right to have a copy, so ask. Just saying 'normal' is not good enough. That's an opinion, not a result. And we all know about doctor's opinions!

[BirgitteG]

Dear Rosebud - you're having a difficult time, so sorry for you.

Well, research shows, as far as I know, that levothyroxine in large doses can cause osteoporosis and cardiac issues down the road. I'm convinced, though, that it is because of the loss of potassium, caused by the high levels of thyroid hormone in our blood for some hours every day after taking the levothyroxine. The danger of hyperthyroidism is the very high levels of hormone causing excessive loss of potassium, which can be life threatening - we just loose enough to make our levels below optimal (maybe within, but in the bottom of the range), which can cause a lot of symptoms, among them high blood pressure (which in turn can cause pressure in the head) and weight gain. I've written more about it, please have a look at my profile - the post is called "I got my energy back and ..."

My very best wishes for you!