Spoke to Endo without much success

[Kimkat]

@SlowDragon I contacted my endo today and managed to speak to him. Told him of my concerns and he told me that if he gives me another 25 mg which will take me to 50mgs I may go into hyper again??? I said that wouldn’t it be better for me to start on 50 now and I would have a month to six weeks on it before my next bloods. He disagreed with me and said let’s just leave it until our next call in September. I asked him about having full bloods and vitamins and he said if my vit D was adequate that’s ok. When I mentioned folate, b12 etc he said that I didn’t need them?? I let my husband listen in on the call, just so that he could understand what it’s like when you’re talking to these consultants, he couldn’t believe how dismissive he was.

[SlowDragon Administrator]

Yes....about typical

Sorry he was so dismissive

Suggest you email Dionne at Thyroid uk for list of recommend thyroid specialist endocrinologists

[e-mail]

As endo is clearly unhelpful you will need to get FULL Thyroid and vitamin testing privately

We need optimal vitamin levels

[Kimkat in reply to SlowDragon]

Spoke to endo who said that I should contact my GP to get full bloods and vits, if I had a problem to call him back and he would arrange it. So I spoke to my GP, who first of all said that as I had my bloods done on July 3rd it was too early, so I said that they were TFTs only and not full, had a bit of a stressful few moments, then had to explain that 25mcgs are the absolute lowest I could be on and as I probably don’t have any thyroid to go back to hyper, why can’t it be increased? I then asked if she knew something that I didn’t with regards to whether my thyroid may be growing back (tongue in cheek) and she gave a massive sigh and said ok, I’ll sort your appointment to come in and get them done, so I said I hope that will include vit d, folate, ferritin and b12 as I really need to know what they are and she said of course but we know they’re ok, so I said well looking at my last results they were dire and she said well not exactly! 😩 I didn’t push it as at least I’m getting the bloods done without having to pay 🙏🏼. Also I have tried to research my Endo and he appears to be mainly diabetic, so I will probably have to look in another area ☹️

[SlowDragon Administrator in reply to Kimkat]

Good

So make sure to get blood test done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

What vitamin supplements are you currently taking?

Need to stop any supplements that contain biotin a week before any blood tests as biotin can falsely affect test results

Come back with new post once you get results

Have you had the list of recommended thyroid specialist endocrinologists from Dionne at Thyroid UK?

NHS and private lists

[e-mail]

[Kimkat in reply to SlowDragon]

Don’t have biotin in any of my supps, collagen doesn’t have it in, vit d is better you spray and vit c.

Booked for Friday morning 8.40 which is good.

I haven’t checked out the Endos yet but I will, I thought I would check out mine first then go from there.

[silverfox7]

If you have to see him again, take your husband with you or another adult. Might not be so bad then in front of a witness.

[Kimkat in reply to silverfox7]

Yes thank you silverfox, unfortunately my next appointment is a telephone appt in September but my Endo was quite happy with the fact that my TSH was down from 14.9 to 7.53 in the 8 weeks that I have been on Levo, in fact he said ‘this is excellent news! So let’s just keep you on this until your next bloods’. As it’s my first time on Levo I don’t know how long it takes to kick in but I can’t imagine , after having RAI 2 years ago, it will go below 2 without a higher dose as I’m only on 25mg. My husband will be next to me when I have my next phone appt.

[guysgrams in reply to Kimkat]

Even though your TSH came down it is quite clear you are in need of more replacement than what you are on. I'd try to find another

[shaws Administrator in reply to Kimkat]

My goodness! The fact that you've had your thyroid gland removed tells me that you need your Free T4 and Free T3 tested at the very least.

Your dose of 25mcg levo is very low unless you are very frail with a heart disease.

We cannot function as normal without optimum 'frees'.

Levothyroxine is an inactive hormone, i.e. T4 and is supposed to convert to T3.

T3 is the Active Thyroid hormone and our brain and heart need the most.

Most doctors and endocrinologists and many thousands of hypo people seem to do o.k. on levothyroxine but on this forum most feel very unwell.

All blood tests have to be at the earliest possible, fasting (you can drink water) and allow a gap of 24 hours between last dose of hormones and the test and take afterwards. This helps keep the TSH at its highest as it drops throughout the day.

Ask doctor to check B12, Vit D, iron, ferritin and folate.

Always request a print-out of your results with the ranges for your own records and post if you have a query. Ranges are in brackets after the results.

[Kimkat in reply to shaws]

Yes thanks Shaws, slow dragon had already advised me on how to get bloods done, which I followed to the letter. Levo 24 hrs earlier, no other meds and only water, had bloods done at 8.30am, then took my Levo as soon as I got back to the car. I know it’s my health and it’s important but I don’t want to pee anyone off as once I’m in front of the endo or on the phone, I forget stuff (my brain fog is horrendous at the moment) but I will try to hold my own, read as much as I can and take notes before my next appointment. I do find it mind boggling though 🤪 as it’s all relatively new to me. Also it appears that since I complained that my blood tests weren’t on my GP surgery app, they have magically appeared. My vit D tests came back Saying Adequate and my endo was happy with that too 🤦🏼‍♀️

[shaws Administrator in reply to Kimkat]

Wherever vitamins/minerals are 'adequate' I'd try to increase them.

Once-upon-a-time -from 1892 onwards our lives were saved through researchers finding that grinding the thyroid glands of pigs (NDT = natural dessicated thyroid hormone) that provided all of the hormones a healthy gland would have i.e. T4, T3, T2, T1 and calcitonin restored patients health and no-one died from then on.

Then Big Pharma wanted a cut of profits and produced levothyroxine (T4) and in the USA doctors were paid to prescribe it rather than NDT (which many people still take today) but NDT has been withdrawn in the UK. Not forgetting blood tests as we used to be diagnosed by doctors who were trained in clinical symptoms and given a trial of NDT.

So, in the United Kingdom we've had NDT withdrawn - despite it suiting many people. T3 (liothyronine) withdrawn instantly without notice and leaving thousands desperate and trying to source their own.

Our options are now down to levothyroxine - suits many but can make many feel worse (I'm one).

I hope you feel better soon.

[Kimkat in reply to shaws]

Also I have a pacemaker with no actual problems there, im 66 next week 🎉and fairly fit and active. I have a two partial thyroidectomies and RAI In 2018.

[shaws Administrator in reply to Kimkat]

Happy Birthday for next week. I'm sorry you've had two partial thyroidectomies.

[tattybogle]

I must be missing something........... if they burn away your thyroid gland , and then won't give you any Levo......... where do they expect your T4 to come from....... Osmosis ? Photosynthesis ? doing Tai Chi ?

only half joking !

[Kimkat]

Exactly tattybogle! It’s very worrying, especially after reading some of the stories on here. It gives you the feeling of hopelessness.

[Kimkat]

So to add insult to injury, I have received a letter from my Endo telling me to stay on the original dosage of 50mcg of Levo???? I’m only on 25mcgm, I wanted him to increase to 50, so he obviously didn’t listen to a word I said. Angry doesn’t come close 😠

[pennyannie]

Hello Kimkat

Can I just add a fully functioning working thyroid would be supporting you on a daily basis with approximately 100 T4 + 10 T3. and read T3 is about 4 times more powerful than T4.

Levothyroxine is T4 and a storage hormone that needs to be converted by your body into T3 the active hormone that the the body runs on, and read the average person uses about 50 T3 daily just to function.

Your conversion of T4 into T3 can be compromised if your core strength isn't strong, and it's essential that ferritin, folate, B12 and vitamin D need to be maintained at optimal levels.

RAI is known to trash vitamins and minerals :

Primary hypothyroidism caused by RAI is more difficult to teat :

Your natural feedback loop is broken, a TSH blood test is not an adequate measure of anything and you need to be dosed and monitored on T3 and T4 blood tests with the intention being to bring both these vital hormones into balance and into the upper quadrants of the ranges.

Personally I just think that when there has been a medical intervention both T3 and T4 should be on the patients prescription for if, and possibly when, they will both be needed to offer the patient good health and wellbeing.

I can't quite believe you have only just been prescribed Levothyroxine, but it's a start and you should have blood tests every 6 weeks to monito and adjust up to bring both T3 and T4 levels up the range and to start to alleviate your symptoms, and yes you should also be testing the vitamins and minerals as these will play a crucial role in your recovery, though sadly the medical profession do not seem to have been taught of their relevance.

[Kimkat in reply to pennyannie]

Yes thank you for that. I have had full bloods done recently and I am hoping that I will be able to get them up on my Gp app shortly. I do realise that this is going to be an uphill struggle and quite honestly I’m not looking forward to the battle ahead. Because of Covid it’s difficult to get to see my usual GP, not sure why. The female GP that I have dealings with at the moment is adamant that she is right and even mentioned to me that I should let the medical professionals do their job and the ‘of course the tsh is important in establishing what is going on with my thyroid!’ I did try to remind her that it’s not a thyroid hormone but as she began to get irritated, I thought it best to back down, for now at least. I am due more TFTs in around 3 weeks, prior to my telephone appt with my Endo, so that should be interesting to see what he has to say. I think for now, as I have only just started thyroxine recently (I’m on my fourth month) I will give him the benefit of the doubt but I have to say that my fatigue and muscle pain are getting to the point where I’m finding it difficult to find the energy to walk any distance. After saying that I usually walk around 4-6 k a day if possible but my leg muscles are constantly painful and feel tight. Extremely worrying coming from a keen skier 😟