My GP took me off Levo and I have Hashimoto I feel really poorly so changed my GP and got an Endo referral finally but need advice please

[Kazbe]

Hi please could I get some advice on my medication and levels I've had a terrific response before which I am so grateful for 😀

My GP put me up to 50mcg of Levo I had terrible palpitations so bad I ended up in A&E they did nothing I've got an infected wisdom tooth which has been going on for 2 months 5 courses of antibiotics it's given me gastritis and gallbladder flare up! Having tooth out with general anesetic 25th Aug at last !

My Gp took bloods

28th July TSH 4.56. (0.3-5.5)

Serum free triiodothyronine 4.5 (3.1-6.8)

Serum free T4 14.4 (12-22)

Antibodies 450 (34)

GP said normal only borderline before no need for thyroxine ? Took me off them !!!!

I feel tired exhaustion still got palps fever hot flushes insomnia well really poorly ! My new GP agreed to 25mcg Levo !

I've had cancellation come through next week

He's a professor endo ? please could you suggest what I need to be asking for would be very much appreciated wondering if I need T3 instead if so how much ? Thanks in advance Kazbe 😀

[Nanaedake]

I can't answer your question about T3 but someone here will. Most people feel better when their TSH is near to 1.0 or a little lower so 25 mcg might not be enough. Make sure you get a blood test in 6 weeks time and adjust the dose until you feel well or get near to the lower reference range of TSH 1.0.

You should also ask your Endo to check for vitamin deficiencies as many people with autoimmune thyroid conditions are low in vitamins especially vitamin D. People are finding that their levothyroxine does not work efficiently until vitamin levels are at least mid range. Check for vitamin D, ferritin, folate and vitamin B12. These are the ones that a lot of people find they are deficient in.

If you've had a lot of courses of antibiotics they may have affected your absorption of vitamins and levothyroxine. Gastritis also affects absorption so good reasons to check levels.

You may have had a reaction to increase in dose of levothyroxine for several reasons. One reason could be low vitamin levels. Another reason could be that you had a Hashi flare at the same time as raising dose.

A rapid heartrate does make you feel ill and I've also experienced this when raising my dose of levothyroxine until I optimised vitamin levels which seemed to help. Despite this, I've experienced it when the tablets are faulty or with a poor quality batch, so you could also check that the levothyroxine you are taking suits you, try a different one.

[Kazbe in reply to Nanaedake]

Thankyou so much for the advice I'm taking supplements but not enough only 1000 Vit d and ferritin was 71 so I need to take iron too I'm taking multivitamins and b12 . I think I need to up all of these to maximum doses like you said my bodybuilding s depleted with essential supplements ! Il get ordering off amazon any suggestions for good brands ? I've been taking Boots brand Thanks Again Kazbe 😀

[Nanaedake in reply to Kazbe]

Just watch iron supplements, you should not be too high in range so you need to ask the Endo or GP to test in a few months time if you supplement to keep an eye on it.

Multivitamins are often poorer quality supplements and better to be more specific and targetted about what you take. In addition to B12 get a good B multivitamin that has more absorbable forms of the B's such as methylfolate rather than folic acid. For B12, methylcobalamin is the most absorbable form. Most multivitamins include B12 in the form of cyanocobalamin but this has a cyanide molecule that has to be removed by your liver in order for you body to utilise it so not so easily utilised. It's good to take a B multivitamin along with B12 to keep the B's balanced.

You need to get your vitamin D checked before you supplement, many people with thyroid disease are deficient. Vitamin D is not water soluble so it can build up in your body and you should monitor it to make sure you don't go over range.

[SeasideSusie Remembering in reply to Kazbe]

Ditch the multivitamin, they contain not enough of anything to help, usually the wrong and least bioavailable form of any of the ingredients, and if they contain iron that will cancel out anything else as iron must be taken at least 2 hours away from any other supplements. And if it contains calcium or iodine then these shouldn't be supplemented unless tested and there is a known deficiency.

You need to know levels of the following and supplement any deficiencies or low levels

Vit D

B12

Folate

Depending on the range for your ferritin, it needs to be half way through. You should be able to maintain your ferritin level by eating liver regularly, maximum 200g per week due to it's high Vit A content, and eating other iron rich foods apjcn.nhri.org.tw/server/in...

[Scazzoh]

Ask for copies of your blood tests (you have a right to these), so you can track improvements. Most surgeries don't routinely give out blood test results. Try giving up gluten, as this can make Hashimoto's symptoms worse.

[ColinK]

I'd bin the multivits, they are never really that good.

Try something like Jarrows B12 5000mcg + Jarrows B Right complex.

Vit D capsules 5000IU

and for Ferritin Solgar Gentle Iron 25mg + VitC to aid absorption.

Remember to take your vits 4 hours away from your thyroid medication.

Any excess in B12 will be passed out of your system when you pee and might make it look illuminous. Regular checks to make sure you don't go over range on Vit D and ferritin, just aim to stay in the upper range.

[ColinK in reply to ColinK]

Nanaedake beat me to it, but as she says.

Good luck.

[helvella in reply to ColinK]

It is riboflavin that has the very strong colouring effect!

[diogenes Remembering]

Seems to me that ALL doctors need re-educating on how to use and interpret results. I've recently written to the Scottish CMO about this and other matters (i.e. misleading TSH in therapy) and perhaps an extract will help patients to patintly explain to the medical world how to use test results:

It is however a more fundamental problem that I wish to address, which I do not think has come to the authorities’ attention. That is the wholly mistaken confusion between the meaning of an individual’s place within the reference range and the application of statistics to the diagnosis of that individual. Such confusion has led to the entirely mistaken position taken by practitioners and endocrinologists that merely “being in the normal range” is equivalent to being correctly treated for thyroid dysfunction. I am a scientific adviser for a charity in this field and have indirect daily contact with many patients dissatisfied with their treatment. Again and again they report dismissal of their concerns because their results (such as they are, TSH often being the only guide) are “in the normal range”. This is confusing the range as developed statistically with the position of the individual within those statistics (otherwise termed the act of “shoehorning”). Additionally as I stated before, the TSH span appropriate in conditions of hormone therapy is different from that pertinent to healthy subjects and is additionally variable according to the degree of remnant working thyroid tissue.. Free T4 is rarely measured, and free T3 almost never, when it actually should be the test of choice. As you correctly point out the individual patient’s presentation should have precedence over biochemistry. Unfortunately, ample evidence shows this is not the case in practice. The medical world needs some fundamental education as to the difference between the statistic and the individual point, and the implications for diagnosis. Being dismissed as being adequately treated, wherever in the range the results lie is simply a naïve misapprehension by the diagnostician. A given reading is only a statistical probability of the appropriateness of that reading and the closer the reading is to the edges of the range in question, the less likely is that reading to be classed as normal. Indeed the limits of the reference ranges are not hard and fast dividing lines, but smooth transitions from a greater likelihood of health to an increasing one of dysfunction. This is shown by the fact that reference ranges only include 95% of subjects with 2.5% at each end being excluded, not from a medical diagnostic position but merely from statistical analysis.

[Rapunzel in reply to diogenes]

Just a little testimonial amplification to diogenes' excellent assertion. My GP told me that I had no need for a higher level of medication as I was 'in range'. My result: 4.68 mu/L Range 0.35 - 5.5mu/L. Tool.😠

[gabby57 in reply to Rapunzel]

The blurb on my test results says in black & white "Aim for TSH towards the bottom of the reference range for T4 replacement in primary hypothyroidism, targeting to around 1.0 mU/L for symptomatic patients." Reference range is 0.55 - 4.80, so aim for 0.55 - 1.00 then. Yet one GP I saw thought 1.6 was OK & ignore symptoms. Another tool.

[sadchick in reply to Rapunzel]

Reading these posts I'm feeling increasing anger. This confusion and lack of adequate training in thyroid issues costs lives. I'm told that my TSH of 4.12 (from previous 5.9) means my GP has refused to increase the dose of 25mg to a higher dose

[sadchick in reply to Rapunzel]

Rapunzel, same here. My TSH is now 4.12 (from 6 weeks ago, 5.9, when he started me on 25mg Levo. When he gave me the improved TSH result last week, he said he wants to keep me on 25mg. He said we'd see in 6wks time after another blood test, and that things take time to improve. I don't want to waste my life waiting. MY aim is to get to 1.0 TSH since so many sources I've read say this is the best figure, and that 4.0 is not 'optimal'. Well it's MY body, and I want optimal. Simply can't understand why GP refused to increase dose. Feel angry. Don't know whether to just be a good little patient and ask again in 6 weeks time

[Rapunzel in reply to sadchick]

Hey chick Welcome

So there's some info here thyroiduk.org/tuk/diagnosis... which might help you. Otherwise just keep reading. My own take, in a nutshell

We're on our own, here, until endocrinology takes its collective finger out of its @rse and starts listening to patients instead of treating by numbers

You can feel better but more often as not by either careful self-treatment

thyrophoenix.com/adjusting_... or taking a witness to your GP appointments for support and to prevent a GP bullying you into his idea of optimal treatment

Diet, vitmains and minerals at optimal levels and acceptance are important, the former most especially if you have Hashimoto's thyroiduk.org.uk/tuk/about_...

Finally feeling well if it will happen at all will take a good while. You have been ill for a while and just shrugged it off. Give you body time to recover. But 25mcg levo ain't going to help anyone feel better. It's a starting dose for an elderly patient or a patient with heart issues. You ? Thought not.

Yeah, be angry, I've got a real 'tude with my GP but then, like most, he had half a day in his training on the whole endocrinological system ( endocrinology is only 100 odd years old...) and sets his store by bloods just like he's been told. It's not in your head, you don't need anti depressants (right now) and that fact you're near the top of the range means your GP is a tool like mine. Stay. Read. Arm yourself.

change.org/p/itt-campaign-g...

Just so you know, I can be an OTT gobsh*te. But I feel for you.🤗

You're welcome

[Kazbe]

Thankyou so much for all the replies they are extremely helpful and il getbdecent vitamins now as I wasn't taking the right amounts for my levels ! My Vit D was 50 My Ferritin was 71 and my B12 was 339 none of which were in the top ranges so hopefully once I'm optimal on all my vitamins and minerals I should feel much better 😀 Fingers crossed for my Endo referral hopefully get my meds sorted too ! Thanks everyone x

[sadchick in reply to Kazbe]

Awesome response ☺Yes, i feel vulnerable about GP. I have also had pre-existing mental health condition which makes it harder still to remain objective and calm. Thank goodness for your support, and this forum. Thank you, Rapunzel. Will print out to remind myself. I am not alone