Endocrinologist insist that my blood work shows... - Thyroid UK

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Endocrinologist insist that my blood work shows thyrotoxicosis. Please take a look.

Rosebud1955 profile image
21 Replies

Hi everyone: Thanks for being there when others needs support and guidance. I Met with the endocrinologist today and i’m so stressed. Just an update on my situation. TT for papillary 2017, presently taking Synthroid 100mcg, 7.5 Cytomel. Supplementing with magnesium glycinate twice a day, taking vit. D drops, good quality B complex, selenium, vitamin C, vitamin B12, I’m on house arrest ( can’t even leave my house to walk for 5 minutes due to severe plantar fasciitis, and bone spurs. Excruciating pain in my toes and heels, severe tingling and numbness in my toes, heels and thighs, swelling in my knees and ankles, bloated abdomen, dry straw -like hair that is falling out, lost most of my eyebrows, skin dry and itchy and continues to gain weight, no appetite, heat intolerance and sweating. Endocrinologist is obsessed with my tsh, insisting that i’m suffering from thyrotoxicosis. I tried to argue that my ft3 & ft4 are not over range but she refused to listen. She was very adamant in decreasing my Synthroid to 88mcg. I’m feeling ill, not coping with anything, feel like a vegetable. I will enter my results below. PLEASE HELP!!!!! I had to walk out of her office without any further treatment. I made appointment with another endocrinologist for Monday. I’m seeking advice before my appointment on Monday. I’m in agony 24/7. I would appreciate any advice as to how to proceed.

Tsh:0.02 (0.32-4.00) Ft3: 3.0 (2.6 -5.8) Ft4: 13 (9-19) calcium: 2.24 (2.15-2.60) sodium: 146 (135-145) eGFR: 93 (>90) cortisol a.m. 4.76 (135-537) Vit. D : 156 (75-250)

Vitamin B12 a bit over range, other vitamins optimal. PTH & ACTH are pending. How does these impact my well-being.

I’m scared i’m going to be more ill if they try to reduce my dosage. I’m 64 years old. Can anyone suggest what my dosage should be, taking into consideration my recent blood work.

Thanks to all.

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Rosebud1955
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21 Replies
Lora7 profile image
Lora7

I am not an expert but I do have a lot of knowledge about this. I think you need an increase not a decrease. Your TSH is suppressed but it needs to be because you have had cancer. Why does your Consultant not know this? I would get another Endo if I was you she doesn't seem to know what she is doing. Hopefully some of the experts will be along when they wake up because it is 4.00 am in morning here in the UK.

Read this it will explain what I mean.

thyca.org/pap-fol/more/tsh-...

Lora7 profile image
Lora7 in reply toLora7

I just realised I have given you a US link.

This is a bit more complicated it is for Doctors so perhaps she should read it.

ncbi.nlm.nih.gov/pmc/articl...

shaws profile image
shawsAdministrator

This doctor has only looked at your TSH result and pronounced you're hypERthyroid. Another 'specialist' who knows absolutely nothing about hypothyroidism.

TSH - is not from the thyroid gland, but from the pituitary gland. I note the fact that you have no thyroid gland whatsoever so producing none at all

thyroiduk.org.uk/tuk/thyroi...

I am not medically qualified but:-

Tsh:0.02 (0.32-4.00) Ft3: 3.0 (2.6 -5.8) Ft4: 13 (9-19) calcium: 2.24 (2.15-2.60) sodium: 146 (135-145) eGFR: 93 (>90) cortisol a.m. 4.76 (135-537) Vit. D : 156 (75-250)

TSH is low, FT3 should be nearer the upper part of the range as should FT4. So you are undermedicated.

Whoever you are consulting with should get another occupation as she's doing no service to those who have hypothyroidism especially those who've had removal of the thyroid gland.

If you're on a combination of T4/T3 it should be on a 3:1 or 4:1 basis.

thyroiduk.org.uk/tuk/testin...

This person you are relying upon to help you relieve symptoms is an idiot - to be polite.

thyroiduk.org.uk/tuk/testin...

SlowDragon profile image
SlowDragonAdministrator

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).

If/when also on T3, make sure to take last dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test

Is this how you do your tests?

If you did ......Your results show you are under medicated and need increase in both synthroid and cytomel

TSH is almost always suppressed on any dose of T3

Most important results are FT3 and FT4. Yours are too low

Suggest you increase just one at a time, not both

Usually T3 is prescribed as 2 or 3 small doses per day.

(2 doses approx 12 hours apart. Or 3 doses approx 8 hours apart)

So perhaps try adding second dose cytomel mid afternoon

Retesting 6-8 weeks later

Rosebud1955 profile image
Rosebud1955 in reply toSlowDragon

Hi SlowDragon, thanks for replying. Yes, I followed all the guidelines suggested on this forum. Ft4 : 24 hrs away from bloods, Ft3 12 hrs apart.

I stopped B vitamins 7 days before, bloods drawn on empty stomach. Will increase Synthroid by 12.5 mcg for two weeks, then increase Cytomel by 2.5 mcg. She tried to scare me about my age and thyroid meds, so I will be careful with all increases. In your opinion, am I doing the right thing?

Thanks

SlowDragon profile image
SlowDragonAdministrator in reply toRosebud1955

I would only increase synthroid or cytomel (NOT both) and wait 6-8 weeks and get retested before considering any further increase

Rosebud1955 profile image
Rosebud1955 in reply toSlowDragon

O.K. I will stick to the increase in Synthroid and wait 6 weeks as you suggested. I have a conversion problem, that’s why she added the Cytomel. I will wait and see what the 12.5 of synthroid does.

Thanks.

SlowDragon profile image
SlowDragonAdministrator in reply toRosebud1955

You could start with increase in cytomel. Just not a good idea to ever make to changes at once

Rosebud1955 profile image
Rosebud1955 in reply toSlowDragon

Thanks, will do.

shaws profile image
shawsAdministrator in reply toRosebud1955

You may find the following helpful i.e. Safely Getting well etc.

naturalthyroidsolutions.com...

pennyannie profile image
pennyannie

Hello Rosebud

Just to add, a fully functioning working thyroid would be supporting you daily with approximately 100 T4 + 10 T3 daily.

You are not over medicated, your T3 and T4 are both low in the range, and once on any thyroid medication supplementation the TSH is not a measure of anything, especially since you do not have a thyroid.

Optimal vitamins and minerals will assist conversion of T4 into T3 which is what the body runs on.

I think you know, you need to find another endocrinologist.

Rosebud1955 profile image
Rosebud1955 in reply topennyannie

Thanks pennyannie, I have started my increases, Synthroid 12.5 mcg for 2 weeks, then Cytomel 2.5 mcg. My age is a factor (64yrs old) so I will be careful with increases.

pennyannie profile image
pennyannie in reply toRosebud1955

Age is just a number, and I felt like 102 when on only Levothyroxine/Synthroid and a lowly dose for someone without a fully functioning thyroid.

I'm 72, and several months into self medicating with Natural Desiccated Thyroid. I did also buy T3/ Cytomel and trialled a combo with T4 and that also worked for me.

I'm more " over the hill than you " and feel I have climbed a mountain but feel better than ever. It's a slow build, but I know I'm going in the right direction and that's mostly down to this amazing site, and the knowledge and support that is generously shared.

I think 64 is the new " whatever you want it to be " and age shouldn't be used as an excuse for bad, dismissive doctors.

MissGrace profile image
MissGrace

Your endo is a nincompoop. Run away as fast as your hypothyroid legs will carry you.

If you are taking T3, that will lower your TSH and both your T3 and T4 are quite low in the range. Did this comedian even conduct any physical tests to see if you were over-medicated?

This man is going to make you ill and keep you ill. Escape! 🤸🏿‍♀️🥛

Lora7 profile image
Lora7 in reply toMissGrace

It is a woman .... but I agree with you 100% :o)

Rosebud1955 profile image
Rosebud1955 in reply toLora7

Hi MissGrace, thanks for your response. Yes she is a total idiot and very incompetent, I will not see her again. I’m increasing Synthroid by 12.5 mcg for 2 weeks, then increase Cytomel by 2.5 mcg. I’m 64 years old so I will be careful with increases, she’s using my age to scare me.

Thanks

MissGrace profile image
MissGrace

Oops! Either way, run for the hills! 🤸🏿‍♀️🥛

Batty1 profile image
Batty1

I really wished I saw your post earlier I'm having the same issues as you for 3 yrs now (thyroidectomy pap cancer 2016).

I was taking 2 grains of Armour Thyroid now I'm on 88mcg synthyroid and 10mg cytomel and my heart rate is so low I actually thought I was going to pass out recently and then my HR shoots up fast which makes me hot and then it settles down for some reason, and like you my TSH is super low and has been for 3yrs inspite of T4 only or combo T4/cytomel and armour thyroid...honestly I don't understand how we can be anything but Hypo since we don't produce any form of natural thyroid and yes if we were on super dose of thyroid meds maybe ...but 88mcg is low.

Rosebud1955 profile image
Rosebud1955 in reply toBatty1

Thanks for taking note of my dilemma. Sorry you’re going through the same. Yes, 88mcg is low for thyroidectomy. At one point my Endo wanted to decrease mine to 88mcg +5mcg Cytomel, that’s hardly anything. I’m the same as you, my heart rate can be 56, then quickly up to 80. Never higher than 80, I can figure out why she insists that I’m toxic. I now weigh 178 pound with a large gut. I was 150 pounds prior to my thyroid journey. I’m now one big mess, it’s frustrating and depressing. The worst thing is that no one really understands our suffering. Even my family don’t think it’s a big deal. My Endo tricked me, she ordered blood work to assess my adrenal function, after I left the lab, the phoned them and added tsh, ft3, ft4. Of course the levels were at the very top of range while my tsh was almost non-exixtent. She then tried to justify that I was over medicated. The bloods were drawn 4 hours after my t3 & t4 doses. She will then use those results to decrease my doses. That’s dishonest, I will dump her after the next visit. It’s a no win situation with these Endos. I’m now tweaking my own meds, I sometimes feel uncomfortable doing it. My symptoms interchange so often, sometimes i’m Hot, sometimes i’m cold, sometimes headaches. I don’t know when i’m high or low. I sometimes feel like giving up the battle.

Best wishes to everyone, let’s keep on fighting for our health.

Batty1 profile image
Batty1 in reply toRosebud1955

Rosebud1955,

I get the eye brow raise when I tell my Endo I wasn't fat until you ripped out my thyroid and left me under treated and now all you think is I sit under a table in the dark consuming containers of ice cream WITHOUT A SPOON ...you know he wants to laugh but its true I was fit and thin 3 yrs ago and in 3 yrs Ive gone from fit to fat and crippled because of crazy leg pain which Im told is a "psoriatic arthritis flare" brought on by thyroidectomy. Now I have pulsating noises in my ears and dare I even think this is one more problem....I should change my name to 49 going on 109 this is what I feel like everyday!

LuluCops profile image
LuluCops

Is that cortisol reading meant to read 476 or is it correct at 4.76??

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