Re: Health regime - plus visit to endo

[Guest guest]

Thank you for your feedback SheilaYou're correct, I had the blood drawn before my morning dose of thyroid medication.I've been taking 200mcg of selenium with breakfast.

I've been taking two lots 305mg Ferrous Fumerate each with around 1g of vitamin C and a glass of water. One dose at around 11 - 12am and the next at around 8 - 9pm. I'm hoping that my serum ferritin will be around 40 by now.

I also take around 1g of vitamin C with my breakfast (along with selenium, NAE, and the B vits). And I'm now avoiding drinking tea or coffee at the same time...I tried a zinc gluconate tablet from the chemist and it tasted horrible. Wouldn't say it was chalky! So I may be alright for zinc.

I've this last few weeks increased to 4000 IU of Vitamin D3. I had been taking 2000IU daily for about 6 months. I don't know what the reference " Total 250H Vitamin D desirable range 30 - 100mcg/L "   means.

I saw an endocrinologist today and she said that my vitamin D levels are good.Folic acid is on my list. I haven't upgraded my B12 to the sublingual yet but will do.

Regarding my appointment today with the endocrinologist. Not much joy I'm afraid.The first thing she said to me was " Oh you're unusual and you're interesting... "  

She was fine about what I'd been doing - trying the various doses and having blood tests at the appropriate times. And she noted that I felt better on 2 grains Nature throid and noted the problems I had when I took a lower NT dose in combination with 50mcg thyroxine. 

She told me that it is " known " that there are some people, usually women, who prefer to have their thyroid hormones a little bit on the high side ie, taking around 25mcg more of thyroxine than the " recommended " dose. She said there were dangers of irregular heart and osteoporosis.  And those individuals who went on to have heart arrythmias were usually presenting with a too high pulse at some point. And that this was related to thyroid. I asked her what she considered a normal resting pulse, and she said around 80 beats per minute. I pointed out to her that I'd checked my pulse a few times when I'd been on the combined thyroxine/Nature-throid dose and a couple of times it had been below 60. (My resting pulse for quite some time hasn't been above 70.)

She asked me things like how much Nature Throid did I need to take to feel " normal " and I said that I was " OK " on 2 grains, but if I took 2.5 Grains I might expect to notice a faster pulse rate at night.

She went on to tell me that she thought that she'd heard the consultant endocrinologist in a conversation with a registrar who I'd seen previously, say that the trouble with natural desiccated thyroid is that what I'm taking won't get picked up in their " assays " . And, even though I have been going there for 9 months, turning up for blood tests 6 weeks after being on a set dose, it could be that the blood tests are of no use, and that they aren't actually able to correctly monitor me.  In which case, this has to be clearly stated in a letter. Otherwise I might end up with osteoporosis (and somebody could blame them)... 

No further appointment made until a letter has been written... I may be asked back for a 3 monthly check, but I may not, because of the possibility that, in spite of being interesting, I'm impossible for them to monitor... (in which case, what is the point of going.)

(Apparently nobody is on Natural Desiccated Thyroid at this clinic - and nobody within the NHS.)I think they may be puzzled by the fact that I simultaneously have a suppressed TSH and low range Free T3 and Free T4. 

Well, I don't know where that leaves things, but I left thinking to myself, I'll continue doing what I've been doing. I'll request a bone scan as soon as possible and keep taking the Vitamin D3 and using the progesterone cream, building up my serum ferritin etc...

I didn't ask for the copper, magnesium and zinc testing - seeing as I don't know whether I'll be going back!It was all a bit odd.Have you come across this idea of   " out of reach of our assays " before? I did talk to her about NDT being a legitimate preparation and the fact that my serum Free T4 levels adjusted in sinc with whatever dose I was taking etc.  I also asked whether they did the 24 hour urine test - or whether they could measure my basal metabolic rate in order to monitor me. But no, they can't do any of that. I feel like I'm some sort of unexplainable extraterrestrial...!

Lynne

[Guest guest]

I received a phone call from the registrar endocrinologist who I saw this morning. She told me that I am discharged. On the basis of my suppressed TSH I am over medicated and they are writing to me and my GP saying that this has been explained to me. Plus presumably that I am therefore at increased risk of osteoporosis and atrial fibrillation.

Apparently my GP should be able to continue to monitor me by testing my blood levels 12 months or so. She said being discharged isn't to do with me taking Nature-throid. They'd also be discharging me if I was taking thyroxine. The decision seems based on the TSH. 

I think she changed her mind about the " assays "  but it wasn't very clear.

[Guest guest]

Be grateful that this Endoprat has discharged you. You really do

not need any help from her as she is quite unable to provide you with this.

Find yourself somebody who actually CARES about their patients and who are

asking why you continue to suffer when their TSH is 'normal'. There are some

really good endocrinologists around. I have sent my list of those doctors who

will use some form of T3, either synthetic or natural for those patients who

don't do well on thyroxine-only, so these doctors must know something that the

majority don't know.

Luv - Sheila

I received a phone call from the registrar endocrinologist who I saw this

morning. She told me that I am discharged.

On the basis of my suppressed TSH I am over medicated and

they are writing to me and my GP saying that this has been explained to me.

Plus presumably that I am therefore at increased risk of osteoporosis and

atrial fibrillation.

Apparently my GP should be able to continue to monitor me by

testing my blood levels 12 months or so. She said being discharged isn't to do

with me taking Nature-throid. They'd also be discharging me if I was taking

thyroxine. The decision seems based on the TSH.

I think she changed her mind about the " assays "

but it wasn't very clear.

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[Guest guest]

Thank you SheilaI did feel relief to be discharged. Phew.Thank you for sending me the list of doctors. One of the consultant endocrinologists on your list works at the same hospital I've just been discharged from, but it looks like a different clinic. I'll email you privately about this. Then check in with my GP after the letters have come through.

Oh to top it all, my GP's receptionist phoned yesterday to let me know that I've reached menopause! Celebrations all round!Still feeling much better, thank you, now I'm carrying out your recommendations regarding iron, selenium, Vit D etc.

I sent an email yesterday in support of Dr Skinner and signed the petition.Lynne