Thyroid UK
84,290 members99,306 posts

struggling bigtime newbie (update and advice)

Hello again everyone. I recently posted for the first time. Just to recap, I have been diagnosed Hypo 15 months ago after many months feeling ill. Been increasing slowly to 100 levo to get to a tsh of 1 or under. Felt quite bad when I went from 50 to 75 but it seemed to settle a bit but I was still quite symptomatic...... When I went to 100 instead of feeling better I just slowly felt totally poisoned each week with extreme fatique, breathlessness and didn't feel me anymore. .....Looking back I wished I had stopped the 100 dose but it was all unknown territory for me.. Since I haven't responded the way I “should” since my tsh had reached 0.6 my doctor recently suggested it may be a mental issue since I had to deal with a close family member becoming quite ill and my body is shutting down( although he isn't saying I don't need levothyroxine. He more or less said that if the t3 etc was good I have have to be “managed “ differently and we know what this means. He's making this assumption on superficial consultations, and not knowing what Im able to do, when, how long for , what activity I push myself through each day because things still have to be done.

Anyhow, we got the results back and the t3 and t4 are way down in the lowest quarter . I posted them again below. From the advice I got here ( thankyou so much) I spoke to him on the phone and discussed that I wanted to reduce my levo back to 75 and look seriously at my ferritin levels. I again explained why and he reluctantly agreed. So here I am, going back a step and trying to make sure the vitamins are optimal. The thought of increasing levo seriously scares me as I was just a mess. I strangely had a few good days about a week back into 75 levo and a few days on the iron supplement but I have got back to being quite fatiqued again . I guess its early days. My muscles are not as sore and i'm not as breathless.

Could I ask you lovely people some specific questions again?. I need to have good reliable information to fight my case. I had to tell him that the ferritin was too low....i honestly don't think he is skilled enough to manage me and I certainly will not accept its in my mind because he has'nt explored the options with me properly.

Question 1

I'm now taking ferrous fumarate 305mg one a day...my serum ferritin was 63(13-300) Does anyone know what I should be aiming for and any idea how long it takes to raise ferritin?

Question 2

Are there any good reliable articles to support the vitamins and minerals having to be optimal to enable levo thyroxine to work.

Question 3

Are there any good articles supporting T3 in thyroid treatment.Also is it possible to get well just taking T3 alone? If I'm not a good converter do I need levothyroxine at all ?...

Question 4

Am I entitled to ask for a referral to an endocrinologist if I am not becoming well at the" general practise" and have information to support my case? If things don't change I have run against a wall with this doctor. I could see another but don't know where they stand with knowledge of thyroid issues etc. I suppose at the least I could get her to refer me.

Question 4

He seemed to think because I had got to tsh 0.6 that we were “there”....that road doesn't obviously work for everyone ...am I right in thinking that the tsh isent always the important value if the ft4 and ft3 are low?

So sorry for all the questions...I obviously wish I didn't have to ask at all....sigh. Thanks again. This forum has become a bit of a lifeline to me. In spite of being ill im also now becoming angry at the way my illness has been handled, and when I think of my doctors answers to my questions along the way its frightening. I think this forum gives people strength, especially when they need it most.

TSH 1.1 (0.27-4.2)

T4 16.6 (12-22)

t3 4.3 ( 3.1-6.8)

SERUM FERRITIN 62 (13-300)

IRON 14.6 (10-30)

TRANSFERRIN 2.7 (2-3.6)

Percentage iron saturation 21.9% (30-40) LOW

B12 was over 900 6 months ago and im still taking a sublingual

I take brazil nuts for selenium

vit D I dont know yet but am taking 4000 iu plus a vit k as advised my members here

Im also taking a probiotic. Started to take betaine hcl briefly as suggested by another member but will introduce it later as starting too many things at the same time can muddy the water.

best wishes to all

34 Replies
oldestnewest

A balanced healthy diet of meat, fish and vegetable will contain all of the the vitamins and minerals your body will need.

Exercise is often neglected with people with Thyroid problems but it can elevate your moods and kickstart a desperate stubborn low energy level.

You Doctor is a GP I take it. If so he is by definition a "General Practitioner", you should speak to the Endocrine Unit and ask you Dr to refer you, I would also ask you Dr for a referral to a Dietitian too.

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You need to get your vit D, vit B12, folate and ferritin tested. Hypos often have low nutrients because they have low stomach acid, and therefore difficulty absorbing nutrients from food.

If your FT3 is not optimal, be very careful with exercise. Exercise of any sort, uses your T3, and the more strenuous the exercise, the more T3 it uses. Being hypo, you will not be able to replace that T3 easily, and it's low T3 that causes symptoms. So, just gentle walking, swimming or yoga until you are optimised.

Please be aware that endos are usually diabetes specialists, and know little about thyroid. Unless there is something specific you need - like T3 - that your GP cannot provide, you are probably better off sticking to your GP.

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hello greygoose and thanks for replying.

I've actually listed my results in my post and my questions were relating to these, especially the ferritin which was low. From what I have read on this forum its necessary to have it at a good level for conversion, and im now taking a prescribed iron supplement. I need to know when i've reached the proper range for good conversion, so therefore if it doesent change things I need to consider other things ...like T3....i was hoping never to have to consider self medicating ....but i feel so ill i can't go on like this. Just doing the things daily around the house and maybe a short outing out is all I can manage at the moment .

I don't think i can go much further with a GP as mine already stated no-one on the NHS does T3.....i was hoping to take my chances with a referral but I understand what you are saying about the endos. Maybe my post was a bit long winded . Probably better to stick to specifics. :)

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NHS does still prescribe T3, but only via an NHS endo and even then it can be with difficulty. You can look up your area CCG website, search Liothyronine and see what it says.

dailymail.co.uk/health/arti...

Suggest you email Louise at Thyroid Uk for list of recommended thyroid specialists as an option to consider. Some are NHS

louise.roberts@thyroiduk.org.uk

What's your folate level and are you also taking vitamin B complex as well as B12 to keep B's in balance

Vitamin D, might be good idea to also take some magnesium as it's a cofactor of vitamin D

vitamindcouncil.org/about-v...

Do you have Hashimoto's? High antibodies

If you do then trying gluten free diet is definitely worth trying - just don't expect GP to suggest it

amymyersmd.com/2017/02/3-im...

As you have already realised only change one thing at a time, or you have no idea if it's a positive change or not

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thyroiduk.org.uk/tuk/treatm...

juniperpublishers.com/jetr/...

progressivehealth.com/top-s...

Ferritin and Folate should be mid range.

Yes you can ask to be referred to an endocrinologist.

Have you had your thyroid antibodies checked?

You absolutely cannot just rely on TSH!!

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many thanks Kate...just seeing this now...will read your stuff😊.Best wishes

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Hi Katepots

writing this a bit after so hope you don't mind the question....im also sending this to 3 of you who kindly replied to my post so someone will see it hopefully before tue when i have the appointment.

Im preparing for an appointment with a new gp to help me go forward with all this. Im preparing my own plan which includes advice from members here....I want to keep it as concise and clear as possible.

Since i felt dreadful going from 75 levo to 100 I have reduced back and am taking ferrous fumatate to raise ferritin. My b12 and folate were ok but I have still to try a test for vit D and am going to address cortisol and low stomach acid.

Is it possible to improve things like this without raising levo, the assumption being I will be getting more T3 from better conversion? I hear many times here tsh has to be 1 or under but i got to 0.6 and felt dreadful.

Is it possible therefore to have a higher tsh and feel well as long as the t3 is in the top third? 'Im expecting her to know little about all this .

If I improve things with the nutrients etc and still feel unwell then I can slowly try going back up. Thats more or less what i will be saying in the letter i'll be handing her. To be honest my head is spinning trying to research stuff this weekend and im dreading the appointment. I would feel better having someone onboard helping me with bloods etc. IT's also a first in the respect I will have to be honest why I want to see another GP at the practise( the other saying there was possibility its my mind since i havent responded to Levo)

Also one last question....if there is unconverted t4 in the equation( although my t4 is low i was told by another member..all i know is i felt dreadful) but IF there was, would it be better splitting a dose?. Logic being there is less to cope with at once. I know T4 is a storage hormone but i guess its trial and error.

thanks again ...hoping someone sees this before tue:)

TSH 0.6 (0.27-4.2)

T4 16.6 (12-22)

T3 4.3 (3.1-6.8)

Reply

Hi,

TSH needs to be under 2 but preferably under 1 (we'll usually) for us to feel well and have less hypo symptoms.

Both your T4 and T3 could be a little higher but if you are happy to stick with that dose of Levo and try and sort deficiencies first then make sure you are not getting more hypo symptoms or you may need to increase. If they mere my results I'd be upping the Levo.

TSH is fine where it is.

You must get your thyroid antibodies tested. VERY IMPORTANT!!

You need to know if Auto Immune or not.

Maybe you have a reaction to a filler in the Levo, ask for another brand or you could ask GP about NDT, highly unlikely they'll prescribe it but you can live in hope.

Try taking at the Levo at bedtime maybe, see if helps but to me it sounds like there's a reaction to it.

Get vitamin D tested. You really should know levels if you are going to supplement.

Between 60&100 is good.

Get cortisol tested as I recommend before. Important.

Ferritin and Folate you need to get to mid range.

Good luck with the new Dr.

Write down everything you want to say

Factual in a list as they don't respond to emotion they are trained to look at a list of symptoms so do it like that!

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thanks so much Kate.....don,t want to be on this dose but had to err on side of caution as was just awful on 100. I'm feeling much less poisoned and breathlessness has decreased . Obviously I did 2 things at once ...reduced dose and started iron....sometimes unavoidable.All advice given is so appreciated .Did letter today and just gave overview and what research I did. Going to recheck about antibodies and ask again about D and cortisol...can but try😊..thanks so much for everything

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Personally I find I need vitamin D above 80nmol/L

If your taking B12 then you probably also need vitamin B complex to keep all the B's balanced. Choose one with folate in rather than folic acid.

But you must remember to stop taking it 3-4 days before any future blood tests. Any supplement with biotin in may falsely affect results

endocrinenews.endocrine.org...

You MUST get antibodies tested.

If you have Hashimoto's (high antibodies) then probably need to look at trying gluten free diet for 3-6months to asses if it helps. Great many of us find it does.

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Again thanks so much Slowdragon....everyone's piece of information helps enormously.I'll be checking again about antibodies but am sure the doctor said I had none. Was almost a chore to tell me as I remember asking. However I'm more informed and a different doctor.....not expecting miracles though but if they can at least work with rather than against. Thanks for info about b vits....been thinking that I maybe have unbalanced things ....ta😊

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Hopefully you're body is getting used to the Levo and breathlessness could be improving with iron too 😀

Sort the rest and you may feel better anyway but if not try increasing Levo again in a month or so. X

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Thanks Kate 😊 x

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You say in other post you have acid reflux. This is linked to low stomach acid, common hypo issue. Lots of posts on here about how to improve with Apple cider vinegar or Betain HCL

Also suggests Hashimotos, so definitely need Thyroid antibodies tested.

Being vegetarian and hypo it can be hard to get enough protein. We should all avoid soya.

See The Thyroid Pharmacist website for masses of info about Hashimoto's, including advice for vegetarians

Vitamin D, not a good idea to supplement at high dose without testing. Vitamindtest.org.uk £28 postal test. Recommended twice a year until work out what dose keeps you stable, may need to vary summer to winter

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just seeing those replys now slow dragon.....many thanks.....i was told I had no antibodies but will check again with an appointment with a new gp next week.....i am doing this on phone so apologies if not well done. I need to work out if I'm not converting so undermedicated. However I felt worse the more levo I took. I'm so ill at moment. Have reduced to 75 with an addition of ferrous fumarate....read that this can affect levo!....im also wondering if I have been getting major side effects of levo.....i just seem stuck between a rock and hard place.....that's promising about the t3....i would have thought if levo was working for me I would have felt a bit better with each dose increase.....also regarding the acid reflux,how can you tell if its low stomach acid or high?.....i emailed Louise....i need stuff to help me with appointment and will ask for referring....i just want to feel well....i seem to have regressed bigtime.

best wishes

Reply

Here's a post about low stomach acid

healthunlocked.com/thyroidu...

Also search Apple cider vinegar or Betaine HCL

Lots of posts on here about low stomach acid

Goggle too

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many thanks SlowDragon:)

Reply

Hi Slow Dragon

writing this a bit after so hope you don't mind the question....im also sending this to 3 of you who kindly replied to my post so someone will see it hopefully before tue when i have the appointment.

Im preparing for an appointment with a new gp to help me go forward with all this. Im preparing my own plan which includes advice from members here....I want to keep it as concise and clear as possible.

Since i felt dreadful going from 75 levo to 100 I have reduced back and am taking ferrous fumatate to raise ferritin. My b12 and folate were ok but I have still to try a test for vit D and am going to address cortisol and low stomach acid.

Is it possible to improve things like this without raising levo, the assumption being I will be getting more T3 from better conversion? I hear many times here tsh has to be 1 or under but i got to 0.6 and felt dreadful.

Is it possible therefore to have a higher tsh and feel well as long as the t3 is in the top third? 'Im expecting her to know little about all this .

If I improve things with the nutrients etc and still feel unwell then I can slowly try going back up. Thats more or less what i will be saying in the letter i'll be handing her. To be honest my head is spinning trying to research stuff this weekend and im dreading the appointment. I would feel better having someone onboard helping me with bloods etc. IT's also a first in the respect I will have to be honest why I want to see another GP at the practise( the other saying there was possibility its my mind since i havent responded to Levo)

Also one last question....if there is unconverted t4 in the equation( although my t4 is low i was told by another member..all i know is i felt dreadful) but IF there was, would it be better splitting a dose?. Logic being there is less to cope with at once. I know T4 is a storage hormone but i guess its trial and error.

thanks again ...hoping someone sees this before tue:)

TSH 0.6 (0.27-4.2)

T4 16.6 (12-22)

T3 4.3 (3.1-6.8)

Reply

If optimising your nutrients doesn't help you feel better and tolerate a higher dose of Levo, look into whether or not your cortisol levels are okay. High and low cortisol are both common issues in people with hypothyroidism.

Doctors test cortisol levels with a single blood test. It might be useful as a starting test for people who have Addison's Disease (dangerously low cortisol) or Cushing's Syndrome or Disease (dangerously high cortisol), but most people with adrenal/cortisol issues are not at the extreme ends of the scale, they have levels which are too low or too high, but are still considered to be fine by doctors.

When cortisol is either too high or too low people struggle to tolerate thyroid meds. When I lowered my high cortisol I was able to double my thyroid dose.

Cortisol is best measured with a saliva test. It is a far better test than the blood test used by doctors but unfortunately the only way to get it done is to pay privately. Doctors don't have to be involved.

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hi Humanbean

writing this a bit after so hope you don't mind the question....im also sending this to 3 of you who kindly replied to my post so someone will see it hopefully before tue when i have the appointment.

Im preparing for an appointment with a new gp to help me go forward with all this. Im preparing my own plan which includes advice from members here....I want to keep it as concise and clear as possible.

Since i felt dreadful going from 75 levo to 100 I have reduced back and am taking ferrous fumatate to raise ferritin. My b12 and folate were ok but I have still to try a test for vit D and am going to address cortisol and low stomach acid.

Is it possible to improve things like this without raising levo, the assumption being I will be getting more T3 from better conversion? I hear many times here tsh has to be 1 or under but i got to 0.6 and felt dreadful.

Is it possible therefore to have a higher tsh and feel well as long as the t3 is in the top third? 'Im expecting her to know little about all this .

If I improve things with the nutrients etc and still feel unwell then I can slowly try going back up. Thats more or less what i will be saying in the letter i'll be handing her. To be honest my head is spinning trying to research stuff this weekend and im dreading the appointment. I would feel better having someone onboard helping me with bloods etc. IT's also a first in the respect I will have to be honest why I want to see another GP at the practise( the other saying there was possibility its my mind since i havent responded to Levo)

Also one last question....if there is unconverted t4 in the equation( although my t4 is low i was told by another member..all i know is i felt dreadful) but IF there was, would it be better splitting a dose?. Logic being there is less to cope with at once. I know T4 is a storage hormone but i guess its trial and error.

thanks again ...hoping someone sees this before tue:)

TSH 0.6 (0.27-4.2)

T4 16.6 (12-22)

T3 4.3 (3.1-6.8)

Reply

Is it possible to improve things like this without raising levo

Yes. There is nothing to stop you from improving nutrients and working on your cortisol with any dose of levo.

Is it possible therefore to have a higher tsh and feel well as long as the t3 is in the top third?

That might work for some people, but I'm afraid nobody can make any promises with thyroid treatment. People just have to try it and see.

if there is unconverted t4 in the equation( although my t4 is low i was told by another member..all i know is i felt dreadful) but IF there was, would it be better splitting a dose

I've never heard of anyone benefiting from splitting a dose of T4. But there's nothing to stop you trying if for a couple of weeks to see what happens?

TSH 0.6 (0.27-4.2)

T4 16.6 (12-22)

T3 4.3 (3.1-6.8)

If those results were mine I would want to increase Levo, and then if that didn't work then I would want to add T3 to my Levo or switch to NDT.

Despite your fairly low TSH both your T4 and T3 are below mid-range. It would be a surprise if you felt well with those results.

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thanks for the quick reply Humanbean.....yes I was able to get a low tsh which is what My doctor and I were aiming for, but its obviously not that simple, and I can see clearly the t4 and t3 is low.

The plan in mind is as you said. I'll have to try nutrients first as increasing did not work...then increase....then if i'm still not well consider T3 or NDT as you mentioned. Just want a clear plan outlined for her..

can't thank you enough for all your help :)

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thanks humanbean. Thats quite amazing you were able to do that with your medication. I'll try to read up on that. Obviously I don't know whether I'm high or low. Could I ask how you lowered yours?

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Ditto re the cortisol. My high cortisol is the cause of a lot of my problems.

Defs the saliva test over blood.

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thanks Kate....I've a lot to read up on. Would it be one of the medichecks home testing for that if my doctor isn't keen to do this for me....humanbean mentioned the saliva test had to be done privately.

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This is the test I did :

gdx.net/uk/product/adrenal-...

Read the Description, Analytes and Requirements, and also each of the Additional Resources.

The reason the Genova test is worth doing is because it includes DHEA. Neither the Blue Horizon nor the Medichecks tests for cortisol in saliva include a DHEA test.

For more info on ordering Genova tests - read it all because dealing with Genova is not the same as other companies :

thyroiduk.org.uk/tuk/testin...

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Sound like a better test! Go with this one 😀

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I did the bluehorizonmedicals.co.uk one

Check the different prices!

With code insideout7 there's 20% off this month.x

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I took (and still take) this supplement :

healthmonthly.co.uk/swanson...

The official dose given on the bottle is 2 capsules twice a day. I actually started on 8 capsules a day, quickly lowered to 6, stayed at that dose for a while then reduced again to 4. I currently take 2. I did stop taking them for a while when I ran out, but I regretted it fairly quickly and eventually bought some more.

There are quite a few supplements that help with lowering cortisol. I tried several before I found the one that works for me without unpleasant side effects.

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Rhodiola also lowers cortisol. 😀

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I used rhodiola quite often for a couple of years. Eventually though I started getting jittery with it and had to give it up. I was sorry about that because I got a real boost of energy from rhodiola rosea.

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Doesn't make me jittery but found it made my boobs really tender and sore, I have excess estrogen so. It sure it was the best for that.

For those it works for it's great though.

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Many thanks too kate:)

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Thanks for all that humanbean.:)

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