Any idea what this might be?

[Guest guest]

I'm hypo and currently on 30 mcg T3 in a split dose. My TSH is supressed and my

FT4 low in range as one might expect. My FT3 doesn't make it to the top third

of the range, so I feel that I may still be under medicated.

Over the summer I had a couple of episodes where I had a hot and tender lump in

my neck accompanied by vague flu like symptoms for 3-4 days. Then it went. I

mentioned it to the endo last time I went and he carried out what is best

described as a desultory examination and then said he couldn't feel anything.

Over Christmas I had hyper symptoms (very hot, anxious etc) but hypo signs, low

BP (95/59), low BBT (36.0), normal pulse (78). Since then my neck feels hot and

tender all the time, all across the front, it feels sore deep inside, my voice

is sometimes hoarse and sometimes I feel as though it's quite difficult to

speak. I don't want put anything round my neck.

I'm due to be back at the hospital in February, but I haven't had an appointment

through yet. I have had a call from the endo's secretary to say it's not her

job to make me one, but that is all so far.

I've been hanging on because I thought I had an endo appointment coming up, but

that's looking unlikely now so I'm beginning to feel I should start to make a

fuss about seeing someone sooner rather than later.

Any thoughts anyone?

[Guest guest]

Nudge. This is not getting any better...

>

> I'm hypo and currently on 30 mcg T3 in a split dose. My TSH is supressed and

my FT4 low in range as one might expect. My FT3 doesn't make it to the top

third of the range, so I feel that I may still be under medicated.

>

> Over the summer I had a couple of episodes where I had a hot and tender lump

in my neck accompanied by vague flu like symptoms for 3-4 days. Then it went. I

mentioned it to the endo last time I went and he carried out what is best

described as a desultory examination and then said he couldn't feel anything.

>

> Over Christmas I had hyper symptoms (very hot, anxious etc) but hypo signs,

low BP (95/59), low BBT (36.0), normal pulse (78). Since then my neck feels hot

and tender all the time, all across the front, it feels sore deep inside, my

voice is sometimes hoarse and sometimes I feel as though it's quite difficult to

speak. I don't want put anything round my neck.

>

> I'm due to be back at the hospital in February, but I haven't had an

appointment through yet. I have had a call from the endo's secretary to say

it's not her job to make me one, but that is all so far.

> I've been hanging on because I thought I had an endo appointment coming up,

but that's looking unlikely now so I'm beginning to feel I should start to make

a fuss about seeing someone sooner rather than later.

>

> Any thoughts anyone?

>

[Guest guest]

Hello Dolly, it does sound as if an increase is called for. Has

your free T3 ever been tested? Everybody on some form of T3 has a

suppressed TSH because the pituitary has no need to secrete any as it

recognises there is sufficient thyroid hormone in the blood.

Have you been tested to see whether you are suffering with

thyroid antibodies. Ask the GP to test TPO and Tg antibodies. Antibodies see

your thyroid gland as public enemy number one and sets about its complete

destruction. When they are 'active' they can cause inflammation to your thyroid

gland and can cause a goitre and symptoms. You will need an increase in your

thyroid hormone dose until your thyroid gland has been completely destroyed, as

you will be making less and less thyroid hormone. If this was me, I think I

would try the experiment of increasing by 10mcgs for a couple of weeks, and if

no adverse reaction, i.e. symptoms of hyperthyroidism, increase by another

10mcgs again. To find the dose your body needs, this is the best way to do it,

and once you start getting palpitations, dizziness, sweating, feeling spaced

out, dire rear etc and other symptoms of hyPERT. you then don't take any more

T3 that day, and the following day, you go back onto the dose you were taking

before this last increase, and that is the dose you need to make you well.

Having said all that, are you sure you are not suffering with

low levels of iron, transferrin saturation%, ferritin, vitamin B12, vitamin D3,

magnesium, folate, copper and zinc. Are you sure you are not suffering with low

adrenal reserve, systemic candidiasis, mercury poisoning caused through amalgam

fillings, food intolerances, imbalance of other hormones etc etc. All of these

conditions will stop any thyroid hormone from being fully utilised at the

cellular level and must be checked for and supplemented.

As far as the endocrinologists secretary telling you that it is

not her job to make you an appointment, I would telephone her and tell her that

it is her job to ensure all your endocrinologists patients are referred to the

Outpatients Clinic who make the appointments, and ask whether she has actually

even done this. Who does she think makes the appointments???

Last, what about writing a letter to the endocrinologist with a

copy to your GP. Say that you are not prepared to wait any longer to regain

your optimal health and hope that he will help you by seeing you as soon as

humanly possible. Write a list of all your present symptoms and signs and tell

him about the summer episode and Christmas episode. Take your basal temperature

for 4 or 5 mornings before getting out of bed and write these down if they are

97.8 degrees F (36.6 degrees C or less).

Make a note of the thyroid hormones you are taking plus any

supplements and tell him when these were last increased.

Write a list of the TFTs, you need, to include free T3 as this

is what you are taking and ask if you can also be tested to see whether you

have antibodies to your thyroid, because of the summer/Christmas episode. List

also if you have any members of your family who have a thyroid or autoimmune

disease. Ask also for the specific vitamins/minerals mentioned above to be

tested, and let him know that your research has shown that should any of these

be low, thyroid hormone cannot be used by the cells. We do have a list of

references to show the research/studies that have been done to show the

association between these low levels and low thyroid.

Tell him that you have been hanging on because you thought an

appointment had been arranged with him for February, but now feel you are

unable to hang on any longer.

Give your telephone number and ask if he could spare a few

minutes to telephone you or whether he could ask his secretary to telephone you

if this is at all possible.

Ask last, for your letter of requests to be placed into your

medical notes.

Sorry you are going through all of this Dolly, and I sincerely

hope it gets sorted soon.

Meanwhile, think about the possibility of a little trial adding

some more T3 to see if that helps.

Luv - Sheila

> Over the summer I had a couple of episodes where I had a hot and tender

lump in my neck accompanied by vague flu like symptoms for 3-4 days. Then it

went. I mentioned it to the endo last time I went and he carried out what is

best described as a desultory examination and then said he couldn't feel

anything.

>

> Over Christmas I had hyper symptoms (very hot, anxious etc) but hypo

signs, low BP (95/59), low BBT (36.0), normal pulse (78). Since then my neck

feels hot and tender all the time, all across the front, it feels sore deep

inside, my voice is sometimes hoarse and sometimes I feel as though it's quite

difficult to speak. I don't want put anything round my neck.

No

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[Guest guest]

It does sound as if an increase is called for. Has your free T3

> ever been tested? Everybody on some form of T3 has a suppressed TSH

The endos will not go above 30mcg. They are concerned that I am hyper at this

level, with FT3 mid-range. I quite happily went up to 40mcg last summer and

felt great, but I had a big hair fall and pulled back. I would like support

from them to go for an increase but it will not be forthcoming.

Have you been tested to see whether you are suffering with thyroid

> antibodies.

I have been tested by the NHS and Genova and have no antibodies.

I think I would try the experiment of increasing by 10mcgs for a couple of

weeks, and if no adverse reaction, increase by another 10mcgs again.

I would love to but am worried about another hair fall as I know my ferritin

levels aren't great 60 (15-150) in July and I can't tolerate oral supplements or

get injections/infusions locally from the NHS, or anywhere else.

>

Vitamin B12, vitamin D3 and folate are fine as are adrenals now.

>

The admin at our local hospital is chaotic to say the least. I have a complaint

into PALS at the moment because the endo's secretary told me that they can no

longer respond to e mails from patients! I feel another recorded delivery

letter coming on!

>

I spent this afternoon with a fan on full blast, walked briskly 30 minutes home

and checked BP (107/74), pulse (79) and temp 36.1 so I'm not hyper, but boy am I

hot! No heating on here now.

D