Another useless Dr : Hi all, So yesterday I went... - Thyroid UK

Thyroid UK

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Another useless Dr

Katepots profile image
39 Replies

Hi all,

So yesterday I went to the endo again, hoping for answers as to why I'm still not right.

Only to discover that he puts no value in reverse T3 or T4 and said my last results are normal. Those he has tested!

TSH 0.7

T4 was 4

T3 was 10

What do you reckon?

We then went on to discuss my vitamins ridiculously briefly and this is when he asked me what K2 was!!!???

I've sacked him...

is there anyone out there apart from you on here that actually knows what they are doing with thyroid/hormone testing and recovery?

Back to blue horizon when I can afford it for more comprehensive tests. Humph.

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Katepots profile image
Katepots
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39 Replies
greygoose profile image
greygoose

Hi, it would be helpful if you could differentiate between FT4/3 and TT4/3. And, if you could give the ranges - the numbers on their own are meaningless. :)

I doubt he knows very much about rT3, if anything.

Katepots profile image
Katepots in reply to greygoose

He wouldn't let me have them I did ask. I'll phone the secretary and get a printout sent though, she wasn't in yesterday.

They were three months ago anyway so I'm guessing they'll be different now anyway as I've started to feel so awful. Think I'll just have to get them done with blue horizon AGAIN. It's so damn unfair that we all have to foot the bill!

No he didn't know much about anything and kept asking me questions...

Grrr

greygoose profile image
greygoose in reply to Katepots

Next time someone refuses to give you all the details of your results, tell them they're breaking the law. You have a right to a print out under the 1998 Data Protection Act.

VulpusVulpus profile image
VulpusVulpus in reply to Katepots

Tell his secretary that next time he refuses you your results, you'll report him to the Data Protection Registrar via the Information Commisioner's Office.

Stupid, ignorant man.

shaws profile image
shawsAdministrator in reply to Katepots

RT3 tests I don't think are necessary of all the other more important ones, i.e. FT4, FT3. I doubt if any doctor knows about RT3. Go to the date March 24, 1999 to read about RT3.

web.archive.org/web/2010103... this link

Katepots profile image
Katepots

I'm on NDT😀

B12, vit D, K2 magnesium...

galathea profile image
galathea in reply to Katepots

How much and which brand? It may be a brand that doesnt suit you,

I had to try several before i got one i was happy with. Its my belief that you should start with a hypoallergenic one like naturethroid, then you have a yardstick by which to measure the effectiveness of others.

X

Katepots profile image
Katepots in reply to galathea

I'm on thyroid S . Erfa made me really ill, this seems to be ok. Think it's probably Levels of vitamins still making me feel awful and the Christmas binging!

galathea profile image
galathea in reply to galathea

Both Thyroid S and Erfa are manufactured to have long shelf lives. I cannot use either of them, because they need an extra process to break them down. Explanation here. thyroid-s.com/natural-desic...

"...............Now this is a remarkable statement! It means that there is NO free T3/T4 in NDT. And in synthetics there is ONLY free T3/T4. This makes NDT fundamentally and completely different from synthetic hormones. We see lots of people saying that NDT and synthetic are bio-identical, but (at the time of this writing) we don’t see anyone saying what we have just told you!

After some research on the subject, he added a digestion step to the procedure which would serve to break the bond and release the T3/T4 from the thyroglobulin. The first attempt resulted in improved but still unsatisfactory test results, but at least we were headed in the right direction.

“You will be happy to know that my Thiroyd tablets are good! I am very sorry for the mistake, I was not familiar enough with the biology. I usually rely on other people to explain the biology to me and then I design the analytical methods.

So the original problem was that I was looking for free T3/T4. For synthetic products like Cynoplus and Cynomel my method works great. When I applied this method to thyroid extracts it did not work. Since T3/T4 are covalently bound inside of a very large protein – thyroglobulin – I could not detect them. An endocrinologist gave me some advice and along with a literature search I was able to find a method. I used enzymes to digest the thyroglobulin and release the T3/T4 – this is exactly what happens when we take thyroid extracts orally.

........................

This customer repeated the tests when he received the Thyroid-S samples which we had sent him, and there was still a clear anomaly where the results of the Thyroid-S were about half of the results of the Thiroyd. My feeling, and just based on nothing but personal experience of using these tablets, was the test method was still not completely releasing all the hormones for correct measurement. After further research and investigation and improved test method, we received this message from our customer:

“Here is your data…

Since the data for Thyroid-S was not encouraging last time I did a little extra work to sort this out. There are 2 sets of data.

The first, Digestion Only, is what I did last time. Digestion, dilute and analyze. It worked fine for Thiroyd, but did not work as well for Thyroid-S. Just like last time.The second, is a methanol extraction of the digest. Digest, extraction, dilute and analyze. This worked great for Thiroyd and ThyroidS. There must be something in the Thyroid-S tablet that is holding onto the T3/T4. The methanol was needed to set it free.The reported concentrations are in relation to a single pill of Cynoplus, so the data must be taken in context.Overall I think you can be happy with both of your products.”

Xx

Katepots profile image
Katepots in reply to galathea

Very interesting, thank you!

in reply to galathea

Galathea,

Does this only apply to Thyroid-S and Erfa, and not other brands of NDT?

galathea profile image
galathea in reply to

Anna,

I dont know. I cant even remember where i read about the similarity and the longer shelf lives.... I think i was only interested in those two because i did so badly with them... I do know of other patients who fare badly with Erfa and Thyroid-S.

X

Katepots profile image
Katepots in reply to galathea

What do you take Galathea?

galathea profile image
galathea in reply to Katepots

I used thiroyd from thailand, but i think it was re formulated about a year ago and isnt as effetive now, so i swapped back to naturethroid. However, have been on TR sugar coated since Christmas, so far, so good!

Katepots profile image
Katepots in reply to galathea

Sorry what's tr?

Can't get naturethroid here I've looked everywhere. I'm in UK

shaws profile image
shawsAdministrator in reply to Katepots

I agree with galathea that sometimes we have to try several before we find one that suits us. Fillers/binders in some can affect us.

Well, without ranges you can't really tell anything. With most UK ranges I'd say your FT3 was too high, so overmedicated on something containing T3. RT3 isn't often useful, nor is TT4, if that is what the endo meant.

Katepots profile image
Katepots

Really don't feel overmedicated, quite the reverse! I guess that could still be my B12&Vit D though. Sent off for more bluehorizon tests today though to get some real answers, sod the expense I can't go on feeling like this 😬

UrsaP profile image
UrsaP in reply to Katepots

I've been putting a lot of my problems down to 'thyroid' - as previously was not converting t4 - became toxic with it, got migraines and fibromyalgia. Stopped t4 for t3 only. (problems went in days) But underlying problem was adrenal. Not sure which causing what - chicken and egg - but all connected. Low adrenal making uptake of meds impossible, hence seemingly over medicated. Having same thing at the minute with just t3 -saw Dr Peatfield again this last week - adrenals playing up again. Need to get them sorted first. Just something for you to consider, have you had your cortisol checked? Beware Dr's won't generally recognise adrenal fatigue until it gets to complete failure stage! And I sympathise with you re your Dr...I saw my own yesterday - to explain my visit to Dr Peatfield, and let him know what I was doing -adjusting meds myself - and ask for his support - Basically showed no interest in my adrenal deficiency, asked what I wanted from him 'today' and pointed out almost out of the allotted time!! He's had his last chance! Think I need to change Dr's - another Dr I tried in surgery admitted not even knowing what t3 was ?? What good would she be in helping me if I need help? Scary. Good luck.

Katepots profile image
Katepots in reply to UrsaP

That's so bad re your Dr, they just don't care do they and treat us as though we are hypochondriacs which is so infrutiating. Think my husband feels the same, he just doesn't understand. His last comment was 'can't you go back to the dr and get some more conventional medicine' ??!!! I give up 😬

Yes I've just ordered saliva cortisol test, I know my adrenals will be struggling think they have been for 30 years, definitely time to address!

UrsaP profile image
UrsaP in reply to Katepots

Unfortunately we put symptoms down to other known problems and conditions and the real underlying issue can be masked. But you would think the GP's would consider adrenal problems when thyroid meds are failing. I tend to think that the Adrenal issue is so sidelined by the GP's, they don't even consider it. I'm sure there are better GP's out there...we just have to find them...shouldn't have to tho'. We should all be treated with the same consideration and respect, and with the same decent level of competence. If you do find you have adrenal deficiency make sure you get sound advice on how to deal with, and treat it.

Katepots profile image
Katepots in reply to UrsaP

I'll be coming back to you for advice! Haha

Yes a good,listening,helpful, knowledgable gp...

We dream on!

UrsaP profile image
UrsaP in reply to Katepots

Oh my G! Don't do that! LOL! I only have my own experiences to go by... All the best...

Katepots profile image
Katepots

Yes I'm really careful with my food, grow a lot and produce some of our own meat. Don't eat too much processed. Luckily we have a bore hole so not on mains. Still there's so much crap everywhere that we can't get away from alll of it!!

Thanks.

Katepots profile image
Katepots

It's lovely but a lot of work when you're exhausted haha

No I haven't but I will, thanks for that!!

Katepots profile image
Katepots

Glad he's sorted.

I'll get there!

Hi, iv just joined this but I was living in Australia and was on T4 for years and went from 70 kilos to 121 and was going up 1 kilo a day on a diet of 300 calories a day. I'd previously been on 700 but was going up faster. I went to see an endocrinologist and he drew me a triangle with calories in plus exercise equals calories out. I am a health professional and was really upset and walked out. A professor called me back and they did a bunch of blood tests including for coeliac disease and while I was waiting for the results I ate gluten free increased my calories and lost 20 kilos in one month then another 30 in 3 months. It was great being able to eat again and I went onto a mix of T3 and T4 which worked for a while. When you have coeliac disease you obviously don't absorb anything so I wasn't absorbing any medication hence the massive weight gain. But then after a while my weight started to go up again. This time a GP told me evidence suggests that if you take T3 and T4 they work against each other so you don't get the T3 which is what your body should be converting T4 to for you to get your metabolism to work. So she told me to take T3 only and I have been on these now for about 7 years and no issues. A lot of doctors are behind/old fashioned and even though the evidence says that for some patients they need T3 only they are reluctant to give it, I moved to the UK a few years ago and had to show written proof and see an endocrinologist to get it prescribed here but I told him I would be morbidly obese and eventually die on T4 only so I am lucky to get them. I think it also comes down to cost as they are more expensive than T4 and you should have regular blood checks as they are fast acting not like T4 which takes weeks to adjust, these change your levels in a few days so you have to be careful you are not over or under. But I usually know and used to just ask for a blood test but in seems in the uk you don't get one unless you ask for it. It's a bit confusing.

Katepots profile image
Katepots in reply to

Shocking re your past dr! That must have been very upsetting.

I've been thinking of trying just T3 although the NDT is so much better than when I was just on T4

I'm gluten free too, lost a stone in three weeks and have kept off. I also don't eat anything in the nightshade group as make my joints hurt.

in reply to Katepots

I have multiple auto immune disorders and it's hard because a lot of them come with the same symptoms such as fatigue, joint pain etc. But I also believe diet is a big part as I am vegetarian and ate almost all veggies fruits when overseas but am now on a budget and eating more carbs which don't agree with me. I think everyone is different and you have to maybe keep a diary and listen to your body . I also had a friend though who couldn't tolerate T4 or T3 and was beginning NDT as she had major depression. I'm a health professional but love listening to people's advice as there is not one solution to any problem

Katepots profile image
Katepots in reply to

Quite agree with that! Yes it is a see what works game, so bad that we are left to do it ourselves though.

I've started to wonder if I've got other autoimmune things going on too as some of my symptoms don't just fit with thyroid/Hashimotos.

I'll see what my latest bloods come back with re thyroid and go from there.

Now you're in the UK take more vitamin D seeing as the sun hardly ever shines! It will be a shock to your body if you've been in Oz. Im just thinking about emigrating as always so much better when I'm in the sun 😀

Good luck.

in reply to Katepots

I Think there is good and bad I had my first asthma attack in a hot country but Australia has better public healthcare than uk. You will get a specialist for every thing you have eg endocrinology, respiratory, immunology. Even if you see then once a year they do a full analysis. I was shocked when I came back to uk. 3 day wait in chairs for minor surgery, I have neurological disorder so one hour is a struggle, no pillows for pain support, no band aids after blood is taken. Many third world countries offer more or equal in public hospitals. But if you are planning on travelling good luck.

Katepots profile image
Katepots in reply to

and to you here. Hope you find good help, you sound like you're dealing with a lot.x

marsaday profile image
marsaday in reply to

Interesting about the t4/t3. I am wondering if the problem is more to do with the ratio of t4 to t3. Most people are taking thyroid meds with a 3 or 4 to 1 ratio. So people are taking a lot of t4 and t3.

Dr Blanchard in USA treats his patients with a tiny amount of t3. It really is a new concept in the thyroid world but he has spend the 90's working out what works best and it is a ratio of 98:2 approx of t4:t3.

I worked out my body was doing worse on normal t3 doses along with my t4. So I eventually stopped the t3. I was better on t4 only than t4/t3 BUT I was still off a bit. Using 3mg t3 per day makes a big difference to me

So when your doc talks about this conflict of t4 with t3 I think it is because the t3 is too high and so the body starts creating more rt3 from the t4. If you balance t4 with a little t3 this compliments the mix and turbo charges everything.

in reply to marsaday

I think if you get a great Doc and they really know what they are doing then maybe the mix can work. I have family who have been on T4 same dose for 30-40 years, then friends and colleagues who have had problems. For me T4 alone didn't work and I did juggle amounts but ended up on T3 only which seems to be the best for me but I struggle because I have chronic fatigue from other issues and it's hard to work out what the real issue is. Also I know people who use the mix or the natural dose. The worst thing is the effects of this disease as it can really wipe you out and I've had family members who have been on the same dose with no issues and wonder what I'm grumbling about.

marsaday profile image
marsaday in reply to

What t4 and t3 doses did you use?

in reply to marsaday

Sorry it was a while ago now I can't remember just that they were played around with and did not work

Katepots profile image
Katepots in reply to marsaday

T4 only made me incredibly ill, could hardly function at all after 10 years. Then I discovered this site! Drs keep it all hidden from us as don't want the cost.

Hi also I always got a print off of my results

And sorry, every laboratory has different values so you should try to stick to the same lab for your results and get a copy. I had an amazing GP years ago who said if my results were a bit under or over but I felt ok to just stick with what I was taking. It worked for me

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