Is this all I have to look forward to

[Batty1]

Hi again

I have always worked out 6 days a week and was thin until after my thyroidectomy last year and I now have to watch my food intake like an obsessed monster and all I get in return for my effort is more weight and an endo that offers me diet pills instead of real healthcare.

Im beyond miserable I feel trapped in a fat suit and riddled with tendon pains that just never let up. I did see a rheumy and neurologist this week for my tendon issues and they were no real help the rheumy did provide me with a couple of high powered asprin that absolutley don't touch my tendon issues and they both did confirm thyroid imbalances can cause tendon issues but thats all they offered. I do see a new endo (female) at the end of this month but im not holding out hope that she will see my suffering and I just noticed this week while looking in mirror that I have a lump in the area of my adams apple not real sure what this is if anything and over the past few weeks Ive been having swallowing issues off and on that I chalked up to stress "sigh" I don't know how anyone deals with this disease without going to crazy town im seriously on the verge of moving there.

Sorry for the long post Im just annoyed that this as good as it will get. How does everyone here cope with everything from healthcare, to mental and physical well being after thyroidectomy?

Some people will ask what my thyroid levels are and they borderline high per endo (I will take this up with new endo).

[greygoose]

It does sound like you're under-medicated? What are you taking, and how much? Do they ever test your FT3? If not, they can have no idea how well you are medicated. You should not have to monitor your food intake, like that. What's more, if you don't eat enough calories, it's going to affect your conversion, and make you more hypo. So, you really do need the correct tests. I'm afraid that thyroid care and treatment is abysmal, because doctors are so uneducated in thyroid. Which is why we have to learn for ourselves and - often - self-treat.

[Nanaedake]

If you have a lump in neck, get it investigated. Even slight undermedication could cause mental health type symptoms. Have you had blood tests for vitamin levels? Are you on other meds like betablockers? could other factors be adding to symptoms?

[Kell-E]

I had a thyroidectomy in 2011. I felt cold and tired until I complained and did some homework and changed GPs and Endos. Long story short...started on Levo only (labs normal), added T3 and eventually switched to NDT with T3 added. I feel pretty good.

Read as much as you can in order to educate yourself because you will probably have to argue your case. I take that back, you will definitely have to argue your case. And in the end you may have to self-medicate. But it does get better!

[Hidden in reply to Kell-E]

I take the same NDT + T3 and feel extremely well. I do self medicate the Endos and GP just made me ill on Levo. I had my TT in Oct 2015.

[Clutter]

Batty1,

I think it is worrying that you have detected a lump and are having swallowing issues after having thyroid cancer. Make sure your new endo palpates your neck and throat to check. Many thyCa patients are advised to keep TSH suppressed <0.1 to avoid risk of recurrence.

If your TSH is high end of normal you are undermedicated.

The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 0.3 - 1.0 with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email [e-mail] if you would like a copy of the Pulse article to show your GP or endo.

When you are optimally dosed you should not be gaining weight or having pain. Life may not be 100% as good as it was pre thyroidectomy but it can be a lot better than it is now.

Has your GP or rheumatologist checked ferritin, vitamin D, B12 and folate levels? Deficient levels are common in hypothyroid patients and low/deficient levels can cause pain and fatigue.

[Batty1]

Hi everyone

My recent blood test

FT4 1.75 (0.93 - 1.7)

TSH 0.303 (0.27-4.20)

T3 128.8 (80-200)

THYROXINE TOTAL 10 (4.5-12.0)

Thyroglobul AB <0.4 (<.04)

Thyroglobulin 0.3 Low (1.5-38.5)

No Vitamins test done and I took a waterpill prior to the above test I wasn't aware it could effect my numbers and he never mentioned it either.

I currently take 125 synthroid and 5mcg Cytomel, Endo won't increase or retest for 1yr only offered insult to injury by asking if I wanted a diet pill but I would have to pay for them. I hate that man with the intensity of 1000 burning suns.

And below each of these test results the lab put a note 125+5 hypothyroid (furosemide) may elevate FT4 ,TSH and Thyroxine (whatever this is)

I keep gaining weight and have abnormal water weight in my lower body along with tendon issues.

If It is discovered that im sick again some heads are going to roll. I keep saying I feel wrong.

[SlowDragon Administrator in reply to Batty1]

Presumably that T3 result is total T3 not FT3

You need FT3 tested

You are not in UK?

Highly likely you need low dose T3 added. But important to test vitamin D, folate, ferritin and B12 first

Post results and ranges on new post once you have them

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results

See Box 1. Some possible causes of persistent symptoms in euthyroid patients on L-T4

onlinelibrary.wiley.com/doi...

[Batty1 in reply to SlowDragon]

I thought T3 was (total) and Im doubtful this new endo will retest me since its the same practice as the the diet pill pushing endo I currently have although I have my fingers crossed if not Im done and will seek my own Endo and blood test.

[SlowDragon Administrator in reply to Batty1]

If you are in UK then there are good private blood test options

Medichecks or Blue Horizon

[Batty1 in reply to SlowDragon]

Im in the US and I can do private test as well but I doubt the doctors will honor the results. Do you have issues getting medically cared for after having private test done vs. Doctor ordered?

[Hidden in reply to Batty1]

Yes I live in France and self medicate myself now and feel great.