Thyroid UK
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Still feel hypothyroid, am feeling down.

Hello,

I had a post a while back that got to much for me at the time as I felt so poorly, I have made a lot of changes, like going gluten free, making sure I'm on the right vitamins, taking my thyroxine correctly every time, etc but I am feeling worse and worse.

I've had an increase from 75mcg to 100mcg after I had a reaction to a change from mercury pharma to te va, am on mercury pharma only now.

I have increase in numbness and tingling, exhaustion, low mood, constipation, hair loss, hair texture changes, snaps easily, brittle, coarse, terrible cystic acne, itching, dry skin, and feeling constantly freezing cold, short of breath, weight gain, chest pain, I dont eat a lot and still maintain my weight, which is not what I want, I have puffy face and look awful. I truly believe I need t3 or to come of thyroid Meds completely. I cannot do this anymore. I'm sick, fat and very tired and to top it off I have lost all interest and enjoyment in things, I cry at the drop of the hat, I'm not just depressed because I wish I could do these things and I'm trying so hard to feel better but this thyroid treatment is killing me. I'm off to see gp in about an hour, she increased my thyroxine on the basis of my t4 and tsh changing from last time although still in range, off top of my head, I will go and look at my previous post and update.

But tsh around 0.27 and t4 14.5

Tsh was before that 2.21 and t4 12

I don't think I'm converting well. The gp probably won't increase and will ask me to get a over thyroid test, so I will, I'm also getting a medichecks this week to see myself. But I want to start t3. Can anyone advise me how to ask gp for a referral to a endo or ask for a private script so I can buy it please? I know it's a long shot but I want to know a dr is monitoring me really due to my other conditions.

Thank you for your help

14 Replies
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moomoo

Did you ever get FT3 tested? Without knowing that result you can't possibly know if you need T3.

These results were in your last post 3 months ago

tsh 0.89 r 0.35-4.54 ul/l

ft4 14.5 r 9-19 pmol/l

There's still room for an increase in Levo but you really need TSH, FT4 and FT3 tested at the same time to see how well you convert. It's unlikely your GP can get FT3 tested as well, so can you manage to do a Medichecks or Blue Horizon thyroid panel? And what are your current nutrient levels?

You could do a Medichecks Thyroid UltraVit to get the complete thyroid panel to include TSH, FT4, FT3, antibodies and vitamins and minerals, it's on special offer at the moment for £79 this month (usually £99).

Or if you know your vitamin and mineral levels already then you could do the Thyroid Check Plus for £59 which includes the antibodies with TSH, FT4 and FT3.

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thank you very much for your reply. Ive worked hard for the last 6 years getting vitamins right, no matter how much I try they never get to where they need to be, I think I have some kind of malabsorption. I am on b12 injections, vit d, magnesium, bcomplex, k2, selenium, zinc, fish oil, vit c, folic acid, and occasional iron in the form of spatone. I will definitely do the medichecks, and ill get the £79 because i want to check my d again. If the GP agrees to an increase should I get the test now before I start an increase? Or wait for the increase? Thank you for your help. Yes you are correct that is my last thyroid test from gp. I have now go,e completely gluten free, I am willing to do anything but after like 4/5 years of this terrible worsening of symptoms ne fight will levo and my results going up and down all the time, its not stable ever. I can't keep believing levo will make a change, I feel I need t3 to get back to normal.

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Have you had a thyroid test since being on the 100mcg Levo? It would be an idea to see what your levels are like on 100mcg (if those above are on the lower dose).

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that test you kindly posted was after 3 months on the 100mcg. And after a few weeks I did feel a tiny bit improved but mainly on mood and energy but I am back in the dark pit of fatness and despair now.

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Well, if you can get an increase now you will have to wait 6-8 weeks before testing to include FT3. It might be worth trying though.

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I think I've been on 100mcg 6 months now, shall I do the medichecks now before the increase or wait and do an increase if the Dr agrees to it? Thank you.

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I think if it was me I would do the Medichecks test now, find out about FT3 and push for T3 if found to be necessary (or source my own!). If it shows you don't have a conversion problem, you can hopefully get an increase in Levo then. It will only be a week to do the test and get results.

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thank you for your help. I have justseen the GP, she was very sympathetic and I had a bit of a meltdown crying. She said to me shd wants to retest thyroid and vit d although I'm going to buy medichevks tonight and she said if its in normal range she will refer me to a endocrinologist. Is that progress do you think? I showed het the pics of before levo and at intervals after until now and she agreed I look vastly different and unwell and I shouldn't do. She agreed my hormones aren't stable and I need a specialist she mentioned hw autoimmune tyroid disease can afect the stability of hormones and its more complicated than just replacing t4. Thanks again really appreciate it.

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moomoo

Good call showing her the photos! Nothing like hard evidence to get a point across :)

It's debatable whether an endocrinologist will be any better than your GP. Most are diabetes specialists and know very little about the thyroid. If you can see a thyroid specialist you may have more luck. Email Dionne at tukadmin@thyroiduk.org for a list of thyroid friendly endos and then ask on the forum for feedback on any you can get to (replies will have to be by private message). Then if you have positive feedback on any you can ask your GP to refer you to that particular one, then you would have to hope you see the named endo rather than one of the team. It really is pot luck :(

When you do the Medichecks test, follow the normal advice for testing ie

Early morning blood draw, fast overnight (water allowed) and leave off Levo for 24 hours.

If taking B Complex containing Biotin or a Biotin supplement, leave off for 3-5 days as if biotin is used in the testing then results will be skewed.

If taking iron tablets or if you eat liver, don't take them for a week before test.

Also, send the test back to arrive next day. If using standard first class post then do the test/post Monday-Wednesday. If using Special Delivery Guaranteed Next Day by 1pm then post on Monday-Thursday. This avoids the sample hanging around over the weekend and possible spoiling of the blood.

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hi. Thank you I didnt get to ask many questions because I was crying so much but I think she really got the message that I am at rock bottom and levo has not helped me 1 bit. I emailed Louise Roberts today actually to ask for the Endo list which I had, if I email Dionne will that be the same lst or is it something different? Thanks for the advice. I used to take biotin, I dont anymore, iron occasionally but haven't had any for a few weeks. When you say eat iron do you mean foods rich in iron I should avoid? I believe my last medichecks was skewed because i took biotin. What does the biotin actually do?

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Yes it's the same list.

I meant if you eat liver, I will edit that in case anyone else reads the post for information - eating iron, what a donkey I am :D

Some labs use Biotin in the test procedure, so if you take Biotin and the lab's use Biotin this affects the results.

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ok thank you. There's none near me so I hope she doesn't want to refer to local rubbish hospital. I can travel but the surgery dont like you going further afield, but if I can make a good case for seeing a sympathetic one from here that will help. Thats no worries, I should have known what you meant. :). Thats very interesting, I wondered why it was as someone else said it to me on here, I tldo think when I took it before it affected the test, as the NHS one wasn't good then the medichecks one was much better.

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I'd agree with @SeasideSusie (I cannot link her into this for some reason). Get FT4 and FT3 tested. Sometimes no matter how much levo we take we don't feel any improvements and as doctors just take note of the TSH and not our disabling symptoms getting these two tested privately will enable members to comment. You do get the earliest blood test, fasting (you can dink water) and allow a gap of 24 hours between last dose of levo and the test and take afterwards?

Blue Horizon or Medichecks are the ones to contact and make sure you are well-hydrated a couple of days before drawing blood and hands/arms are warm.

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thank you very much shaws. Yes I do make sure I do all of the above before a draw. I think ill do the finger prick so I can do it early between 6-8am, probably 8.30 am mihf be best ad my nhs are all around that time, would that be a good idea to keep the tests consistent? Time wise.

I just have a feeling inside I need t3, I cannot and dont think I should have to live like this. The idea I thought with thyroid replacement was to replace what you cant produce to feel back to normal and frankly thyroxine has ruined my life, before I started it I was symptomatic but I looked like me still, I don't recognise myself anymore physically, mentally. GP wobt have it that thyroxibe id the issue but if you could see my decline in pictures it would shock you. I am taking pics to gp this afternoon to show what this has done to me.

thank you for the help.

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