HASHIMOTO’S HELP PLEASE!! Should I increase or decrease my levothyroxine? Or what should I do?!!

I really don’t know what to do and my GP admits to being clueless. I am waiting for an endocrinology appointment but in the meantime would really appreciate some advice. I was diagnosed with Hashimoto’s hypothyroidism and started on Levothyroxine in June 2014. Started on 50mcg, increased every 3 weeks to 75, then 100, then 125mcg. I’ve been on 125mcg for almost 8 weeks. I have improved slightly but still feel very symptomatic of hypothyroidism – very slowed down physically and mentally, no memory, confused (improving), difficulty finding words. Back in June I needed 10 or 12 hours sleep. I’m sleeping less now (around 7 or 8 hours) but if I sit down for more than 15 minutes I would fall asleep. Couldn’t make a dash for it if my life depended on it. Feel exhausted all the time and that has not improved much since I started the levothyroxine. Putting on weight about 1lb a week since I started levothyroxine. My temperature has stayed between 35.6 (96.1) and 36.3 (97.4) all this time (on occasions dropping to 35 (95) and mostly around 35.9). My blood pressure has been constantly low (85/63 and sometimes a little lower or higher. My pulse has been between 52-68 mostly but on a few occasions it has dropped to 32!!! but comes back up again soon after. My blood results a month ago (after being on 125mcg for a month) were

TSH 0.02

Free T3 6.9 [3.1-6.8]

Free T4 23.01 [12-2]

TPA 251.2

But I certainly didn’t feel hyperthyroid – more like hypothyroid. (The feeling of being cold all the time improved although sometimes it came back)

Soon after that (3 weeks ago) I did a detox diet eating foods to boost the immune system and to help with Hashimoto’s – this included stopping gluten and eating a super nutritious organic diet which I have carried on till now. Within a few days my head felt clearer and I was less confused but still exhausted and still constipated, dry skin, hair falling out in clumps.

Today’s blood tests show:

Free T3 6pmol/L [3.1-6.8]

TSH 0.01 [0.27-4.2]

Free T4 26.09 [12-22]

I know this could indicate that I need to have less thyroxine, but I have already been on a lower dose with little improvement. I know some people are outside the normal range so I wonder if I should try going up to 150 mcg? But my low blood pressure and pulse is a worry so I don’t want to make that worse. I hear about people who are on 300mcg but wonder if they need that to get them to the ‘normal’ range or if they go higher than normal.

I am also confused about why my free T3 is now lower than the last blood test despite my efforts to do everything to help the conversion from T4 to T3.

A few days ago I noticed that I broke out in sweat on my forehead/upper lip which is unheard of for me. My temperature then was 36.7 (97.3) but it went down to 36.4 ten minutes later. (This is the first time in ages that my temperature has been this ‘high’. This happened again today. I wonder if it is a sign of being on too much levothyroxine or if it is a sign that my thyroid is being attacked and is releasing a burst of thyroxine, or simply that I need more to keep my temperature up all the time...

I hope to see my GP tomorrow so would appreciate any help/ suggestions before that. I have read Hashimoto’s Thyroiditis Root Cause (Isabella Wentz) and am now fairly clued up about the information online but I find it so confusing in my confused state! Help! Please!

I know that GPs here in the UK are unlikely to recognise ‘adrenal fatigue’ so need help to know how to speak to the GP and what to ask for.

Thank you all and wishing you all good health and happiness.

16 Replies

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  • Not once in all of that have you mentioned what your

    Ferritin

    Vit B13

    2

    Vit D3

    levela are

    Unless Ferritin is well over 70 your body is unable to even utilise the levothyroxine because it cannot convert it to T3 which is what your cells are screaming for

    Your free T3 result is actually useless reverse T3

    If I am correct about your feritin level You are likely to need months of iron plus at least 500mg of vit c and T3 ( liothyronine) not levothyroxine before you have a hope of recovering

  • I haven’t used this before so not sure if I have to reply to each separately or just once. Anyway thank you all for your quick replies and your advice. In May just before starting the levothyroxine my serum folate (?is this folic acid?) was 10.9/ml; Ferritin 146 ng/ml; VitB12 443 ng/L; Vit D3 70 nmol/L; D2 4 nmol/L; Total 25-hydroxyvitamin D 74 nmol/L.

    One of you mentioned checking Vit B13 – is that correct or should it have been Vit B12. Someone also said that Free T3 is useless? Is that correct – why is it useless? I thought that was the one that gave the best information.

    I understood that if my Free T3 is raised that means that I am converting the T4 to T3 – is that correct? Should I stay on 125mcg for now or drop or increase the dose a bit? Hoping to see the GP tomorrow and don’t know what to try for.

    Thanks again.

  • FreeT3 is an appropriate and important test.

    i'm wondering if 125 mcg is a bit high although your blood pressure, heart rate and temperature are low. This heart business can take months to stabilize though. What was it before?

    Losing hair can be any of two things: too low thyroid or too high. Why? Hair follicles have their cycles of growth and shedding. Ironically when someone goes too high the rate of shedding increases. So it looks bad, like excess hair loss. But it grows back. Don't worry about the hair.

    Get checked out about the blood pressure and heart rate. Are you taking any other medication that may be affecting these?

  • Thanks for your reply Gabkad. My normal blood pressure is usually a bit low but often around 110/60 or 100/55 if very stressed. My pulse is usually around 70ish - has never been only 30 before. But my blood pressure was low when I was diagnosed hypothyroid before I started the levothyroxine and it hasnt changed much. Only other medication is aspirin 75mg a day.

  • ....when I was like you a long time ago, I was anemic. I drank coffee...it helped.

  • Your Tsh level is low.it should be between 0.5_ 1.5.Your GP may reduce the thyroxine dose up to 25mcg/day.Your health issue is due to low blood pressure.Your Gp should find the reason, may be due to low level of electrolytes.You should also check your level of vit b12,folic acid ,vit D and ferritin.

  • I haven’t used this before so not sure if I have to reply to each separately or just once. Anyway thank you all for your quick replies and your advice. In May just before starting the levothyroxine my serum folate (?is this folic acid?) was 10.9/ml; Ferritin 146 ng/ml; VitB12 443 ng/L; Vit D3 70 nmol/L; D2 4 nmol/L; Total 25-hydroxyvitamin D 74 nmol/L.

    One of you mentioned checking Vit B13 – is that correct or should it have been Vit B12. Someone also said that Free T3 is useless? Is that correct – why is it useless? I thought that was the one that gave the best information.

    I understood that if my Free T3 is raised that means that I am converting the T4 to T3 – is that correct? Should I stay on 125mcg for now or drop or increase the dose a bit? Hoping to see the GP tomorrow and don’t know what to try for.

    Thanks again.

  • It is only 4 months since you were diagnosed and started treatment. It took a year for me to go from 25mcg to 125mcg and to feel the benefits. Also other posters are correct about what other blood tests you have had and what your Vit D, B12, ferritin etc are like. So I would say get the other blood tests done and post the results here for further comment.

  • I haven’t used this before so not sure if I have to reply to each separately or just once. Anyway thank you all for your quick replies and your advice. In May just before starting the levothyroxine my serum folate (?is this folic acid?) was 10.9/ml; Ferritin 146 ng/ml; VitB12 443 ng/L; Vit D3 70 nmol/L; D2 4 nmol/L; Total 25-hydroxyvitamin D 74 nmol/L.

    One of you mentioned checking Vit B13 – is that correct or should it have been Vit B12. Someone also said that Free T3 is useless? Is that correct – why is it useless? I thought that was the one that gave the best information.

    I understood that if my Free T3 is raised that means that I am converting the T4 to T3 – is that correct? Should I stay on 125mcg for now or drop or increase the dose a bit? Hoping to see the GP tomorrow and don’t know what to try for.

    Thanks again.

    Sorry to hear it took you so long to get to 125mcg - I increased mine every 3 weeks! Hope you are feeling better now.

  • Not too good on folate levels,so won't comment, but B12 needs to be a lot higher (ignore what docs say about it being normal) I think B13 was a typo. You are correct about conversion of T4 to T3. Low T4 if you are on levo means your body is not getting enough levo or else your body not absorbing the levo. Low T3 can mean your body is not converting T4 to T3 and is usually improved with good Vitamin levels. The normal protocol is to increase leveo by 25mcg amounts every 6-8 weeks and to test TSH levels each time.

    Do not take your levo tablet on the morning of a blood test and have the blood test as early as possible. That way you get a more accurate reading of TSH etc. Take your levo after the test. (I take my levo before I go to bed, so I wouldn't take it the night before a blood test.) It is important that VIT D and any iron supplement is taking at least 4 hours apart from the levo so as not to affect absorption. Good luck at the doctor. I have read Isabella Wents and several other books and am now gluten and lacto free which has helped to almost totally get rid of my TPO antibodies. When you have antibodies you are more likely to be "up and down"

  • Thanks Crimple for your reply. I didn't take the levo until after the blood test. What level of Vit B12 is optimum for Hashimoto's, do you know?

  • I'm not an expert, but am concerned that you say your GP admits to being clueless about all this. From my experience this has all gone too fast - 50mcg up to 125mcg in a couple of months seems too much too quickly to me, and you haven't had time for your body to make its natural adjustments as the dose changes. One of the key things you have to learn to accept with Hashimoto's is patience - nothing good happens quickly. Can I suggest you take a look at the presentations on Dr Haskell's website Hope for Hashimoto's? hopeforhashimotos.com/hashi... He gives what for me is the most informative and succinct rationale on the effects of levothyroxine and the way your body reacts until you are on the optimal dose. Your GP might benefit from watching too...?

  • Pink Bear, thank you so much for this info and especially the link. Despite trawling the net I hadn't seen those videos. I've watched a few and will watch the rest soon. They really explain things clearly. I'd love my GP to watch them but doubt that would happen - they would need a basic interest and sadly that is lacking... I understand what you said about patience but if I don't get well ASAP I am going to lose everything and end up homeless etc etc. Didnt see the GP today but seeing them on Monday when they are going to reduce my levothyroxine. But I still have HYPO symptoms...

  • Yes Haskell is good.

    B12, I think something around 900-100 mark is supposed to be good for thyroid folks, you can't overdose as it is a water soluble vitamin. Look at the blue headings on right hand side of these posts and click on Vitamins and minerals to read through.

    As pink bear says you have to be patient(definitely not my forte.) My first 5 years on levo weren't too bad, then the antibodies took over and I have been on a long road back to full health, over 2 years. You do at least have a sense of achievement when having read up and tried new stuff and consulted on here. You realise that you are "getting there". I get a kick out of knowing more than the medics! lol.

  • Evo, increasing every three weeks if far too fast! It should be every 6 weeks, to give time for you body to adapt and for the T4 to start converting into T3. And you're testing too often for it to be accurate. Once again, it should be every 6 weeks. I'm not surprised you don't feel good.

    My personal opinion - although I'm aware a lot will disagree - would be to go back to 100 and stay on it for at least six weeks before testing. In the meantime, get your iron/ferritin, B12, Folate and vit D tested at least. And, if your doctor is ameanable, go for magnesium, zinc, selenium. These things are all very important for your body to be able to use the hormone it has been given.

    Make sure you get enough sleep - for a start - a good dose of daily calories to help conversion, plenty of vit C and salt for your adrenals, a decent amount of fat in your diet because you need cholesterol. And, above all, stay calm. Can you take up yoga?

    I haven't read the other replies - too many! lol - so I'm possibly repeating a lot of stuff you've already heard. But never, mind, a second opinon is always good.

    Hugs, Grey

  • Thanks Grey - I only found this and lots of other replies today.... duh. Still not well...

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