what next....really anxious at moment

[mandy72]

letter from endo shows my 24 hour tape from october last year saying it shows sinus tachycardia throughout with a max heartrate of 130

is this related to hypo?

i was allso just starting out on NDT at the time

[shaws Administrator]

I had sinus tachycardia (which I now know was due to medication ) quite a while before diagnoses of hypo. It also occurred with levothyroxine but when I added T3 it damped down the symptoms. Now on T3 only I don't have a problem neither did I with NDT.

They will probably give you beta-blockers to prevent your high heart rate but take them apart from your thyroid hormones.

If you had palps when on levo it might be worthwhile giving yourself a trial of NDT. Sometimes our bodies don't like the fillers/binders in levo.

P.S. of course if we take too much of any thyroid hormones we can have a similar response, i.e. palps.

[mandy72 in reply to shaws]

i was on NDT for 8 months doing really well the for some reason i couldnt take them and only managed 1/4 to 1/2 grain daily split into 2 doses, im now on T3 much to endos disgust and im managing two doses of 5mcg daily

i just got saliva results back and all 4 are high so thinking thats the reason i cannot take my thyroid meds

ecg's bloods and chest x ray all showed fine in recent A/E visits so i really cant figure it out

its making me quite scared as theres heart history in the family

my heart rate varies from day to day anything from 50 to 100+

heres my saliva results incase you missed them

1, 35.32 H.....7.45 - 32.56

2, 24.56 H.....2.76 - 11.31

3, 16.83 H.....1.38 - 7.45

4, 8.55 H......0.83 - 3.86

DHEA am, 3.47.....0.25 - 2.22 (sample 1)

DHEA pm 2.62....0.25 - 2.22 (sample 3)

[shaws Administrator in reply to mandy72]

Hi Mandy, I don't know enough about adrenals etc and those that do will respond. I do know that mine were high but they rectified themselves. It is scary (especially for husbands who are out of their depth) and calling ambulances etc and such fast heartbeats are awful.

As you suggest it could be due to your high adrenals and this might be of interest.

hypothyroidmom.com/cortisol...

[mandy72 in reply to shaws]

i normally just tell hubby i need to go to A/E and he will take me

ill read the link later as a bit wild at moment due to hungry kids

ive started a couple of adaptogens so hopefully they will help

i did glance through the link and endo commented on my BP163/94 on one arm and 171/80 on the other so has suggested antihypertensives

ive allso gained a lot of weight since seeing him in january last year 14.2 kgs , so now severley overweight

[shaws Administrator in reply to mandy72]

Don't worry too much about weight as once on an optimum of the correct hormones for you, it may reduce naturally or diet. We cannot diet if metabolism is too slow/low.

[mandy72 in reply to shaws]

the weight is a huge worry im allmost double what i should be ive not lost any at all it just piles on, even after a week of no appetite i gained weight

[shaws Administrator in reply to mandy72]

I can understand as 14kgs is a lot. I bet your GP/Endo has no thoughts about this? Ask Endo for 3 month trial of T3 and this might interest you:

wilsonssyndrome.com/thyroid...

[mandy72 in reply to shaws]

my GP is so sweet he dont mention my weight, he wants to ge me feeling better before tackling anything else

as for the endo he accused me of sitting at home all day eating, i had to tell him its an effort to get off the chair to go to the toilet and then you would think id just run a marathon

i just broke down and showed hubby my letter he seems to think the endo is just passing the buck, but i have letter in my bag for if i need to go to A/E again and they say all is fine because they have never said they have seen a problem on my ecg

ive bookmarked the link and will try for a 3 month trial if they dont agree then i will buy my own

endo did give me print out on 24 hour ecg and this is all that was shown

3 single VE events and 3 SVE events and sent me on my way

(i dont know where the print out is i put it away safe)

[shaws Administrator in reply to mandy72]

It is disgusting that you have to self-treat and being forced to do so because you have a husband and young family and should be able to enjoy them. Nowadays strangers just look at others and think 'fat' 'overeating'. As for your Endo, supercilious has not a clue about clinical symptoms and has no idea that swelling is due to insufficient hormones.

[shaws Administrator in reply to shaws]

P.S. send Endo a copy of link in order that he can enable his brain to absorb that 'swelling' due to hypo is a clinical symptoms which can be solved by efficient knowledge of symptoms and many would have 'nil points' if they ever did an exam set by the members of this forum.

[mandy72 in reply to shaws]

im hoping to get second opinion, the head of the department is calling me tomorrow to discuss my complaint so if i get to see someone else ill deffinatly take a copy with me

[mandy72 in reply to shaws]

self medicating seems to be the only way for us to get better, sad but true, but i do need to be around for my family and i dont want to be remembered as the mum who sits on her laptop all day

did you see what i put that was on print out from 24 hour tape? i edited post to add it so you may have missed it

[shaws Administrator in reply to mandy72]

I have looked and seen it but don't have much knowledge except that the fact that you have trouble exerting yourself is because instead of 'fat' it is water I believe. Another link for your Endo in particular - an excerpt:

In 1878, Dr. William Ord performed an autopsy on a middle-aged woman who succumbed to hypothyroidism. Upon cutting into her skin, he saw tissues that were thickened and boggy. The tissues appeared to be waterlogged, but no water seeped from his incisions. Dr. Ord realized this disease was unique and previously unrecognized.

Dr. Ord summoned a leading chemist named Halleburton to help identify the substance causing the swelling. What they found was an abnormally large accumulation of mucin. Mucin is a normal constituent of our tissues. It is a jelly-like material that spontaneously accumulates in hypothyroidism. Mucin grabs onto water and causes swelling. Dr. Halleburton found 50 times the normal amount of mucin in the woman’s skin. Her other tissues also contained excess mucin.

(that's before NDT was used in 1892)

[mandy72 in reply to shaws]

hopefully i see a good endo

i seen that artical before i think, i started taking NAC a while ago which is supposed to remove mucin but i stopped all supplements to see if that was why i couldnt take NDT i might start back on it tomorrow and see what happens

[shaws Administrator in reply to mandy72]

I'm not sure what NAC is but I wonder if it would interfere with the uptake of your thyroid hormones? Anyway Endocrinologists should be au fait with mucin in hypo.

[mandy72 in reply to shaws]

i read about NAC on a thyroid page

N-Acetyl-Cysteine, must be taken with 500mg vit c

[shaws Administrator in reply to mandy72]

I would be wary after reading on the following link:

science20.com/news_account/...

[mandy72 in reply to shaws]

yikes ill skip it i think

only read the first paragraph and that was enough for me

thankyou

is there anything that would help loose the water/mucin or whatever it is?

[shaws Administrator in reply to mandy72]

I am not medically qualified but I would take T3 on a trial for 3 months and tell your GP even if you have to get your own. Also tell him you have been neglected by the Endocrinologist as you now think you know the reason for your very quick swelling which is a serious symptom of hypothyroidism/myxedema and your GP knows you are suffering so may be able to suggest an expert. I think you need someone who knows what they are doing rather than telling you to eat less.

As soon as some T3 was added to T4, my whole system calmed down. I read another response that when they took T3 their blood pressure also came back to normal.

[mandy72 in reply to shaws]

i think your right

as suggested ill try 10mcg in the morning while my cortisol is at its lowest and then split the other 10mcg through out the day

i really do need to do something as the longer i leave it the more serious things are going to get

my own GP hands are tied he did give me T3 but said hes not really allowed to prescribe but im 99% certain he will monitor me if i got my own

[shaws Administrator in reply to mandy72]

I certainly hope everything goes smoothly for you as you cannot be left high and dry.

[mandy72 in reply to shaws]

thank you shaws

[Heloise in reply to mandy72]

NAC tend to thin mucous. It is recommended for bronchial problems and recently in the U.S. recommended for some women who have trouble conceiving because their vaginal fluid is too thick. it is also an antioxidant but I've also read it is not good for hypothyroid. No explanation on that yet.

[mandy72 in reply to Heloise]

ill pack my bottle away in my deep dark useless supplement stash

[Heloise in reply to mandy72]

Well, I'm keeping mine. Not sure if I believe those last findings even though they sound dire.

[Heloise in reply to mandy72]

This is one possibility you can think about. Your heart is doing exactly what it should do under the circumstances and you can think of it as a good thing. This man would probably argue against beta blockers but as a quick fix I suppose it's alright. You are in a fight or flight state so your adrenals are pumping out cortisol and adrenaline. So you are right about the thyroid hormone. They go down when adrenals are up.

youtube.com/watch?v=T_Re4ja...(Not working as expected?)

[mandy72 in reply to Heloise]

thank you ill give that watch tomorrow when house is empty as sound on laptop dont go above the tone of the kids and dogs

[Heloise in reply to mandy72]

LOL, understood. It is long and I suggest you take notes if you can but very explanatory.

[Jazzw]

This may or may not be relevant to you - but my hypothyroid OH's pulse slowed down once she was on the right dose of T3 for her. We were scared to raise her dose initially as we thought it would make her pulse faster - it didn't. The increase also brought her BP down to normal when it had been high for years.

[mandy72 in reply to Jazzw]

that would be good if i can get back onto the meds, i keep trying the increase but just not coping with it, i might just pluck up the courage when hubby is home for the day to take a full dose of 20mcg T3 and just see what happens

[Jazzw in reply to mandy72]

It must be really worrying. Wish there was something more I could do to help, other than sending my best wishes x

[mandy72 in reply to Jazzw]

thank you, anything heart scares the pants off me

at least im getting a referral to a cardiologist so some much needed tests can be done

[shaws Administrator in reply to mandy72]

Don't do anything rash. If you were on thyroid hormones previously you can switch over to T3. I am fine on approx 30. I did go higher but dropped down and feel much better for it.

20mcg of T3 is equal to around 60mcg of levo. It is absorbed (as I am sure you know) quickly and it has to saturate our cells in order for them to send out 'waves' which last between one and three days. I'd not take anything else intially as you don't want any interference. Coffee/chocolate etc can affect the uptake.

[mandy72 in reply to shaws]

ive been taking small doses of T3 for over a week now

coffee is something i will have to get a substitute for as i have 2 cups in the morning

[humanbean]

Several comments, which might or might not be relevant to you.

1) I had sinus tachycardia, with a heart rate up to 150, when I was seriously short of iron. I haven't had it again since getting my iron up to good levels.

2) I'm currently taking T3 only. When I was on too little my heart rate and BP were too high.

3) I have found that altering the time I take my T3 has an impact on my heart rate and BP. My cortisol is particularly high first thing in the morning. I can only tolerate a very small dose of T3 at that time. My cortisol is less over-the-top later in the day. I do better taking T3 from lunch time onwards. I've looked at your results and your best cortisol result is first thing in the morning - it is the one least over the top of the range, so it might be the time for you to try taking T3 or other thyroid meds. Have you shown your cortisol results to your doctor and asked for cortisol testing on the NHS? If you haven't it would be worth trying. Have you been tested for Cushing's Disease?

[mandy72 in reply to humanbean]

drs say my iron is good but we all know they are usually wrong so ive just started to try dessicated liver, i read it was as good as iron without side and since ive been unable to take thyroid meds ive gotten really constipated and the lowest dose of iron was bad

i have 4 highs but will continue on what i can tollerate and hopefully once those highs lower ill be back on meds

i showed my GP results monday, he said endo needed to be seen but when i told him i reported the endo he said he would reasearch and go from there

he did say it could be stress/depression related but allso said cushings

i see him again 22nd july so fingers crossed he will do the tests that are needed

ill allso mention high cortisol tomorrow when i get the call from endo head

i did get a blood cortisol test a year ago and it was bottom of the range

plasma cortisol level 242 nmol/l (138 - 690)