Hypo or hyper?

Hi there just new to the list but was diagnosed with hypothyroidism 11 years ago. I was on 50 mcgs of levothyroxin but after reading about it changed to a desiccated supplement. My levels on the levo went up to 5.19 and the doc wanted to increase levo. This was when I decided to try desiccated. My levels dropped to 0.69 . The thing is, I don't suffer with fatigue (apart from age related) and rather than being cold I cannot handle heat. I literally have to sit in front of a fan when the weather is hot and cannot function. I was wondering if anyone had any experience in this. I do have dry skin and thinning hair though, but am 79 yrs old. Thank you

[greygoose]

Hi Lizbo, welcome to the forum.

What levels are you talking about? TSH? With a TSH of over 5, you were very hypo. And, once you are hypo, you cannot become hyper, that's a physical impossibility. You can be over-medicated, but a TSH of 0.69 does not suggest over-medication.

That said, only testing the TSH is totally inadequate. I know doctors tend to do that, but doctors know nothing about thyroid. The TSH isn't even a thyroid hormone, it's a pituitary hormone and is a very bad indicator of thyroid status because so many things can affect it.

There are over 300 known hypothyroid symptoms, but you do not have to have them all to qualify! Fatigue is just one of that, but just because you don't have that particular symptoms doesn't mean you aren't hypo. It's very difficult to judge by symptoms alone because so many of them can by both hypo/under-medicated and hyper/over-medicated. Heat intolerance is a case in point. Not all hypos suffer from the cold. So, pretty certain you aren't over-medicated, and could in fact be under-medicated. But, unless you get your thyroid hormones tested - FT4 and FT3 - you can't really know.

[Hidden in reply to greygoose]

Thank you all for your replies. I initially went to the GP because i had extreme tiredness and they did a TSH test and it was 5.19. I was put on Levo at fifty mcgs and everything was ok. I never had any other symptoms. Then the yearly blood test showed it had gone up to 5 something again (2019) so i went onto desiccated thyroid supplement which i got online. By the way, this was not recommended by my GP and the NHS doesn't do any other tests other than TSH. I did get my yearly test done last year and it was 0.69. I didn't tell the GP what i was doing. I have come on the forum because i have lately been having constant irregular heartbeat and wondered if i were taking too much/too little thyroid. Mine is by Regenerative Nutrition and is called Thyro-2. I take B12 and now magnesium taurate which seems to help with palpitations. Also D3+K2. Many thanks again

[greygoose in reply to Hidden]

I don't think that's real NDT - more likely to be a supplement - what we call a glandular - with no hormone in it. And, you'd probably be better off on levo. I don't think your TSH rising was a very good reason to change. You just needed an increase in dose - dose should be increased after six weeks, anyway. 50 is just a starter dose.

I know most doctors only test TSH, but it is possible to get FT4 - and some times even FT3 - tested on the NHS. But, because of these difficulties, many, many people do private testing. Otherwise, they cannot know if they are under- or over-medicated. The TSH won't tell you that. But, it sounds very much like you are under-medicated with those irregular heartbeats - which wouldn't be surprising if your Thyro-2 doesn't have any hormone in it.

[Hidden in reply to greygoose]

Hi thanks again for your reply but the reason I went on to natural thyroid was I read that sometimes as we age we can’t convert t4 to t3 and it is dangerous to have too much thyroxine unconverted in the blood stream

[silverbelle51 in reply to Hidden]

Is that true and do you recall where you read it ? Thank You

[Guost in reply to Hidden]

Hi there I recently have suffered really bad with being over medicated although the doctors say I was in the normal range 0.49. I paid private to see an Endo and had bloods done. I feel better above 1. I am now a lot better. Thanks had irregular heartbeats for 3 months whilst being over medicated along with feeling hot but am much better now on a little less thyroxine.

[Hidden in reply to Guost]

Hi, thanks for reply. How much thyroxine are you on and is this all the medicine you take?

[SeasideSusie Remembering]

Hi Lizbo0713 and welcome to the forum.

I cannot handle heat. I literally have to sit in front of a fan when the weather is hot and cannot function.

I am hypo and I am heat intolerant. I don't do well in hot weather, anything above about 72-73F and I seek refuge in my living room which is cool as it doesn't get the sun. There are many of us who are heat intolerant. Conversely, I feel the cold too and am always colder and wearing more than others. Heat/cold intolerance is listed in the signs/symptoms of hypothyroidism on ThyroidUK's main website here - towards the bottom of the General section:

thyroiduk.org/if-you-are-un...

So really, you're not unusual in that respect.

My levels on the levo went up to 5.19 and the doc wanted to increase levo. This was when I decided to try desiccated. My levels dropped to 0.69 .

Is your natural dessicated thyroid (NDT) prescribed?

TSH (which your 0.69 result will be for) is not an indicator of thyroid status. It's the FT4 and FT3 that tell us that. When on NDT it's usual for TSH to be low (sometimes even suppressed), FT4 to be low in it's range, and FT3 to be in the upper part of it's range, when optimally medicated.

Do you have current test results? You could post them, along with their reference ranges, and we could tell you if there seems to be any problem. If your FT3 is over range that would suggest that you are taking too much NDT and might possibly be causing symptoms of over medication which could be similar to hyper symptoms.

[Hidden in reply to SeasideSusie]

Thanks for reply I’m most grateful

[silverbelle51 in reply to SeasideSusie]

Could you review the numbers again. I know somewhere on this site you laid out the numbers and what they mean and what is diagnostically significant Thank You. I feel kinda on my own here in the U.S.A.

[SeasideSusie Remembering in reply to silverbelle51]

I'm happy to try and hellp silverbelle51 but what numbers are you meaning? I want to make sure I'm giving you as accurate information as I can.

[silverbelle51 in reply to SeasideSusie]

Can you identify exactly what labs should be done to correctly diagnosis and what they mean. I found the Thyroid Evaluation ( Slow Dragon) TSH, FT4, FT3, TPO, TG Antibodies, Vitamin D, Ferritin, B12, but don't know healthy levels. I was Dx on a TSH alone with no physical symptoms, but not provided the number and never ever heard anything about VitB 12 or Folate ! What are healthy numbers and what does it mean when they are out of range what might they indicate? I was naive back in 2013 and I believe I received really poor care here in the U.S.A. I withdrew slowly from Levothyroxine back in 2017 when I couldn't take feeling so very ill and debilitated telling the doctor who told me "a little bit of anything won't harm you" . I followed a suggestion from someone I met and learned to respect and started using Now Brand Cortisol Support and Selenium 200 mcgs. It has been slow, but I have started to feel better and most of the S&S of Hyperthyroid that I experienced from the use of Levothyroxine are slowly fading. What damage does Levothyroxine do to a healthy functioning thyroid? Is the damage permanent. I appreciate I have asked a lot, but I want to be able to make healthy decisions in the future. Thank You

[helvella Administrator Thyroid UK in reply to silverbelle51]

silverbelle51,

I think it would be much better if you posted a new post/question.

Your issues might be missed here on a thread started by another member. Or the replies could get confusing.

You need to get reference intervals (ranges) from the lab that did the tests. No-one else will know and they vary - even two labs next door to each other.

[silverbelle51 in reply to helvella]

I appreciate what you are saying, but it doesn't matter in my case I never got my number results to begin with. All lab tests should be standardized and if they change from lab to lab maybe that is why so many people with "thyroid issues " are having difficulties

[helvella Administrator Thyroid UK in reply to silverbelle51]

Should is true. But they are not. Never have been. And unlikely it will happen in the foreseeable future.

[SeasideSusie Remembering in reply to silverbelle51]

silverbelle51

As helvella says, it would be better to start your own thread because this is not connected to the original poster's question.

As a start you can check out ThyroidUK's information about thyroid testing here:

thyroiduk.org/thyroid-funct...

Please note that the reference ranges quoted in that article are examples only and every lab has their own ranges.

If you require further information then further comment can be made in your new post.

[SlowDragon Administrator]

If your NDT is prescribed by endocrinologist or privately your medic should be testing you at least annually

If NDT is self sourced..you need to get FULL thyroid and vitamin testing done yourself

How much NDT are you currently taking

Which brand

What vitamin supplements are you currently taking

Extremely important to test vitamin D, folate, ferritin and B12 at least once a year

Low vitamin levels are very common when on replacement thyroid hormones

Low vitamin levels are also much more common as we get older

What’s the cause of your hypothyroidism

Do you have autoimmune thyroid disease, also called Hashimoto’s usually diagnosed by high thyroid antibodies

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

plus both TPO and TG thyroid antibodies tested at least once

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis) usually diagnosed by high thyroid antibodies

but 20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis.

Both are autoimmune and generally called Hashimoto’s.

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Recommended on here that all thyroid blood tests early morning, ideally before 9am

Day before test, split your NDT into 2 or 3 smaller doses spread through the day and take last dose approx 8-12 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Are you in the U.K.?

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Come back with new post once you get results

[Hidden in reply to SlowDragon]

Thank you

[SlowDragon Administrator]

Then the yearly blood test showed it had gone up to 5 something again (2019) so i went onto desiccated thyroid supplement which i got online.

On levothyroxine dose is increased slowly up in 25mcg steps until TSH is ALWAYS below 2 and usually around or under one

In 2019 you needed dose increase in levothyroxine up to 75mcg and bloods retested 6-8 weeks later

Likely to need further increase in levothyroxine after next test

Suggest you get FULL thyroid and vitamin testing done before considering how/what you need to do going forward

[Hidden in reply to SlowDragon]

Thank you

[silverbelle51]

I can relate! I had no sx and it would seem Dr. Dx using TSH and I was naive. I was placed on Levothyroxine and felt like I was in a thyroid storm. When I complained I was told I would have to get used of "feeling normal" . I suffered 4 3/4 years and with drew myself, but did inform the doctor. His response was "a little of anything won't hurt you" . What I have come to discover it is fairly routine in the U.S.A. for doctors to dx and treat on an isolated TSH. In the sight of 1 year I had slightly elevated BP which I had never had before. Still cleaning up the mess my life has been made and I do mean mess. I can relate to the heat thing hell I didn't even have hot flashes when I went through menopause, but I learned about them on Levothyroxine. My suggestion if you have concerns pursue answers. There are many good people and monitors on this site who will be helpful. I have no answers just well wishes.

[Deedee24155]

I've been on levothroxine at 100mcg for around 5 years, I live the heat and it isn't a problem to me,but the terribly dry skin with small spots with nothing in them is driving me insane, my GP gives me Hydramol pumps and bath additive but this doesn't help I have to apply it 5-6 times a day,plus I'm on Apixaban after suffering a severe fall down my stairs with Pulmonary Embolisms to heart and Lungs. I do sympathise with you, I feel my Doctors can't be helpful, I've tried for 6 months to try get an appointment but nothing since Covid started. I feel letdown. I hope things improve for you.

[Hidden in reply to Deedee24155]

This is the trouble- you start on one medication and end up on multiple things which is why I decided to go my own way. I have seen dear relatives and friends do this and they have all either died or are in dire straits healthwise. I have left off all thyroid meds at the moment for a few days and am going to see what happens. That is one thing I've noticed is dry itchy skin and eyes and as someone said, acne spots. The palpitations have subsided at the moment so I will update

[Deedee24155 in reply to Hidden]

I hear you my skins got worse and worse, I'm on 8 different medications from blood thinners breathing meds, I've now stopped painkillers as they aren't effective inhalers etc. After a bad fall the night I came home from Hospital I had a fall out of bed and I literally smashed my collarbone and rota cuff badly damaged, they wouldn't operate due to bleeding. Problems I had to wait 18 months I still can't use my arm much and a scar from under my chin to the end of my shoulder. I've started on cbd to try eliminate pain. I'm trying to phase out some mess but will be on blood thinners for the rest of my life. I'm in praise of you. I hope all goes well. Thank you

[Hidden in reply to Deedee24155]

I'm so sorry to hear this Deedee, and i can see how this happens. My friend was put on blood pressure meds (although her pressure was only 140/80 and i told her not too) and she ended up with lung clots and on Warfarin! This is a classic side effect of BP meds. Now even on all this she still van hardly move or breathe. My doctor tried to put me on BP meds and Metformin as i was supposedly pre diabetic, but I refused and sort it myself, and I am doing better (touch wood) than all my friends.

I do hope you find something to help with your problems

[Suzi_]

I have Alopecia Aretera, getting worse as I get older, I sweat at night under the covers, never to the point that u feel! U may need to your endocrinologist to address these issues.