Help with NDT please - stuck

I hope someone can help please. I started on NDT mid-March this year after being on 100mcg of Levothyroxine against the Dr and Endo's advice. They wanted me on 75mcgs, but I still had all hypo symptoms and was gaining weight. I tried 75/100 on alternate days, but I still had hypo symptoms. I then started to get symptoms of TED, dry eyes, grittiness and bulging eyes - my Dr even asked me if the optician said I have bulging eyes. She didn't as this development only happened between December (when I had my eye test and February when TED symptoms were at their worst) I realised then that I was going to have to treat myself. I decided to switch to NDT Thiroyd from Thailand. Following advice on STTM and this forum I have gradually increased my dosage until I am now on 2 1/4 grains (changed this on Sunday). My problem is, although most of my symptoms have improved, I am putting weight on at a ridiculous rate. 7lbs in the last month alone. I had BH blood tests at the beginning of May and had had a limited blood test at the Dr’s last week:

TSH - 2/5/16 - 0.005 (range 0.3-5.0). 2/7/16 - 0.01 (range 0.3-5.0)

Free T4 - 2/5/26 - 17.84 (range 12-22) 4/7/16 – 12.5 (range 12-22)

Free T3 – 2/5/16 – 5.99 (range 3.1 – 6.8) 4/7/16 – 4.7 (range 3.1 – 6.8)

I’m supplementing with B12 as my B12 was 326 (range 250-1000) and I understand that you need to be top of range in this. Ferritin was 118.5 (range 20-150) so this looks OK. Serum Folate was 16.4 (range 10.4 to 42.4). CRP 3.0 (range 0.50).

I’m also supplementing with selenium as I understand that this is needed too. I know I need to get bloods checked by BH again and am arranging to do this. In the meantime, can anyone suggest where I go with this. If I increase to 2.5 grains I get TED signs. When I reduce to 1.5 grains, I get hypo symptoms. I’m at a loss where to go with this. Can anyone help please? Thank you.

35 Replies

  • Do you drop or increase your doses gradually, i.e. 1/4 tablet at a time?

  • Yes I do, and it seems to be OK and then when I try to increase, I get hypo symptoms tiredness (feeling sleepy driving home from work at 4pm) then falling asleep when I get home. Dry and bulging eyes. I'm mindful that everyone says that you shouldn't stay on a low dose for too long, so I've kept trying to increase. I've just ordered Thyroid 11 from BH, should be here in a couple of days.

    My licorice addiction seems to be abating though.

  • Your eyes must be quite painful and I feel sorry for you to have additional problems. TED is a separate condition and this is an excerpt which might be helpful:-

    Treating dry eye

    When the eyes are dry and gritty the best treatment is to use lubricating eye drops – also known as artificial tears. These can help to make your eyes feel more comfortable and help to prevent your cornea (the clear front surface of your eye) becoming damaged from being so dry. Thicker gel type drops can be used to help lubricate the eyes for longer and ointments can help lubricate the eyes overnight. If your eyelids are not able to close fully, your ophthalmologist may suggest gently taping your eyelids closed at night to prevent your eyes from drying out.

    Did you try adding T3 to levo? Sometimes we have to try several methods, unfortunately. I know we can be very disappointed when a change of method doesn't work as we hoped.

  • Hi Shaws,

    Thanks for your response. I am already using artificial tears, but they're not really very good - it's worse in winter when you have the car heater on - have to wear glasses to try to help prevent them from drying out. My main concern is the bulging eyes and my eyesight is deteriorating rapidly, have had 3 changes of prescription in 3 years for reading, but now having problems with putting my makeup on! Thankfully, when I notice they're bulging, I drop back and the bulging does reduce. I'm worried about it becoming permanent though. I see endo in August, I never see the same one twice and although they're not brilliant, they're better than my doctor. I've given up on all the doctors in my surgery as none of them seem to have any idea about thyroid problems.

    I might try adding some T3, I have some as I badgered my doctor for it a couple of years ago (hope it's still in date). She had no idea and it didn't really work very well for me. I ended up with oedema!

    Thanks for your help.

  • I think you should ask to be referred to a Consultant at a Moorfields Eye Clinic (I think they are in quite a few hospitals now with a branch within). I think that would be worth a trip. They would be far superior than anyone else, I believe with regard to your eyes. Then you can concentrate fully on your hypothyridism.

  • Thanks for this Shaws. I will ask for a referral. I don't think you can be too careful with your eyes. I've been really worried about this.

  • My local hospital has a Moorfields 'walk-in' department and my husband went along when surgery nurse couldn't solve his eye problem. It was so quick I thought we'd have to make an appointment but No - we were sent straight to department - waited and he was seen to and an inturned eyelash was removed.

  • Glad he got sorted out. I've looked at the information on the website that you posted, but all the hospitals seem to be in the London area. I'm in the North West between Manchester and Liverpool. Can't see that there are any there. I'll have to ask for a referral.

    Thanks for your help and support.

  • I agree with Shaws. Thyroid problems, because they are involved in every cell in the body, are sometimes blamed (by us) for all ills. I was almost offended when my endo suggested that my pains were not thyroid! I had medicated up to over medication to rid myself of my joint pain. But when I read, in the body of someone's post on here very recently about nightshades - I googled it and have felt a noticeable improvement in my knees since giving up nightshades. I know it's not the same thing, necessarily, but get your eyes checked anyhow. That's the wonderful thing about this forum - ideas, advice, support, that is hard to find elsewhere.

  • Looselewoven, thank you for your reply. I understand that we can sometimes blame thyroid for things which are perhaps not connected, but the symptoms go when I reduce my medication which is why I think it's connected.

  • Do you have any T3? you could try lowering your dose to 1 grain NDT and half a tab of T3 (12.5mcg)

  • Yes I do. I'm going to try dropping NDT a little and adding in T3.

    Thanks for your response.

  • Rita, I'm in the process of just trying T3 only, just over 2 weeks so far, sleeping better and a couple of minor things seem better, but early days yet.

  • Hi Colin, I tried T3 only a couple of years ago, with Dr . She was hopeless and i got into a real mess with it. Had oedema and was terribly tired on it and dreadful burning sensation in my feet all the time I think we kept raising too quickly. Didn't have access to this forum then though. Hope all goes well for you. Rita

  • Rita,

    Weight gain is probably because your July T3 level has reduced.

    Previous low thyroid hormone may have compromised the adrenal glands meaning you could be running high or low on cortisol. Both conditions will affect how thyroid hormone works.

    High CRP indicates inflammation. What level are thyroid antibodies at ? ? ... Inflammation can be majorly destructive but maybe reduced with a gluten free diet & healthy life style.

    Optimising Vit B12 and supporting adrenals may help your body to tolerate the extra NDT.... I am sorry to hear about your eyes. It must be very scary & worrying.

  • Hi Radd, thanks for your response. I thought about adrenals too. Had an absolutely horrendous time in the year before diagnosis - lost my lovely mum and had a horrible time with hospital and care home. My husband died from colon cancer 6 months later (3 months from diagnosis). Then was made redundant - all in the space of 12 months. Consultant said you've been reading the internet when I suggested adrenal fatigue - he said there's no such thing!

    TPA in May 2016 is down to 199.7 from 295 at diagnosis and 376 2 years ago. TPGA in May 2016 is 386.7 - never had this tested before. CRP is 3 (range is 0 to 5.0) never had that tested before.

    Endo put me on Vit D as I insisted on staying on 100mg dose of levo. Dr didn't test this last week. In fact Dr only ordered TSH, it was nurse who did FT3 and FT4 when I asked her to.

    I'm supplementing B12 and selenium myself.

    Thanks for your help.

  • Rita,

    I am so sorry to hear of your losses. Live can be so tough.

    I haven't medicated NDT (just about to start) so can't comment from experience but adding a little T3 sounds good to increase levels until you are more tolerant of NDT. Optimal T3 levels will also relieve the adrenals a little. Have you thought of adrenal supports ? ? ..

    Re SlowDragons reply below... many Hashi sufferers experience gluten intolerance that encourages inflammation. I LOVE food but am gluten free and feel so much better for it. It is not hard if you cook from scratch. I keep cooked sausages, chicken, boiled eggs in the fridge for snacking & those times you just can't be bothered to cook. I also often cook double portions and freeze half.

    If you want further suggestions//receipes, etc just repost a question as many members are gluten free.


  • Hi Radd,

    Thanks for this. I've had a lot of good responses to my post and will just have to got through them to see which I should start to implement. I am aware that going gluten free would probably help a little, but have been put off by the difficulties a friend has had trying to get GF food in restaurants. Looks like I'll have to give it a go.

    Thanks for your advice and support.

  • I have had dry gritty eyes for years - but thankfully only very slight bulging. Got through an enormous number of hypromellose eye drop bottles over the years.

    Turned out I had missed diagnosis of low vit D and magnesium.

    Recently had a lot of improvement since started taking magnesium and even more improvement now on high dose Vit D. Also recently gone gluten free too. Which gave best improvement I can't say, perhaps they have all helped. Or it could all be coincidence....but I don't think so. Time will tell

    Do you also take magnesium with your Vit D? How much vitamin D are you taking?

    Perhaps going gluten free would help improve your symptoms and lower antibodies?

  • Thanks SlowDragon, I'm not taking magnesium with Vit D. Does this help? I'm on medically prescribed Hux D3 20,000unit capsules (Huxley Europe Ltd) 1 capsule every 2 weeks. How did you find going gluten free? I imagine it would be really hard. I don't eat much bread pasta etc in any event and when I was tested, I was told I wasn't coeliac, but that may be because I eat little of it anyway so it might have skewed the result. Will try magnesium and see how that goes and am going to try adding a little T3 into the mix. I've been OK the last 2 days on 2.25 grains, so I'll see how I go.

    Thanks for responding to me.

  • To get D3 levels up I've been told to take 5000iU a day, so 20,000 a fortnight isn't that much.

    The average person's Vit D level is around 30 so you need to take 5000ui a day to raise to optimum level of 80.

  • Hi MichelleBerko, I wasn't sure what level of Vit D we need to be on, so I foolishly thought that I was on a good level of support since it was prescribed by the Doctor. I'll try supplementing myself too.

    Thank you.

  • Lots of us on here have found magnesium does help. I started slowly and cautiously with Natural vitality calm magnesium powder - available on Amazon.

    Apparently, like Vit c we excrete any excess we don't need. Pretty well tolerated by most, though does have tendency to cause loose bowels (good reason to start slow!) But people shouldn't take it if have any kidney issues.

    Gluten....I was very reluctant to consider...but having done it, it is much easier that I thought (I do buy G Free bread and biscuits) otherwise I just make alternative food choices. It does have to be absolute 100% avoidance - eg nothing with malt barley vinegar (that is in a lot of different things), no soy sayce (GFree variety available) similar for beer, lager, etc. I joined coeliac society to get access to huge electronic database of GFree foods. Plus recipe ideas etc. Hugh Fernley Whittingstal has some good GF books too.

    I have been checked for coeliac - was negative. But apparently you can get false negatives. So I am having endoscopy this week as medics are astonished becuase I have been struggling to walk "just" due to low Vit D, so they want to double check it is not coeliac. Slow improvement in mobility now gluten free, on magnesium and high dose Vit D (6000iu)

    Lots on Internet about Gluten and thyroid - apparently if have leaky gut gluten molecules can cross from gut into blood stream. Gluten molecules look very similar to thyroid - body gets confused and makes thyroid antibodies..... Loads more info & detail on web. I don't know if is same for graves as Hashimoto's (I have hashi - see my profile for more)

  • Thanks for the info Slowdragon. I've been avoiding trying to go gluten free as I thought it would be really difficult. I also have Hashi's, but I get TED symptoms when I raise my meds - it reduces when I reduce meds, but then I get all the Hypo symptoms. Just can't see to win! I tried reducing NDT and adding in 10mcgs of T3 today. Seems to be OK. Going to give this a trial and see how I go. I'll mention it when I have my endo appointment next month.

    Thanks for the advice and support.

  • I was reading a blog on patient info and it was mentioning taking 1000mg of Acetyl L Carnitine for Graves amongst other things. If you put in Acetyl L Carnitine and bulging eyes into the search engine you may find the same link. It was mentioned to help with weight loss and eye problems. You can get in a health food shop.

    I have read it may interfere with thyroid gland though so please research further.

  • Katepots, thanks for your response. Interesting! I'll have a look at that. Thanks for the info.

  • I also have TED as well as hypothyroid due to a TT for thyroid ca. I had never been formally diagnosed with Graves' disease. You need an urgent referral to an ophthalmologist who has knowledge of TED. You wil have eye tests but also be seen by an optometrist who will assess your eyes looking for double vision etc. I also needed an MRI of my head to assess the eye sockets and the soft tissue behind the eyeball. TED is a separate autoimmune condition where antibodies inflame the soft tissue behind the eyeball and the tissue becomes swollen, pushing the eyeball forward and causing compression on the eye which can result in permanent damage. It is important in an acute phase to seek treatment. You may require a course of steroids to reduce the inflammation by dampening down the immune response. There are also other strategies for reducing damage. This needs to be assessed by an eye consultant, it is not dealt with by endocrinologists. Get an urgent referral or if in an acute phase turn up in a/e. I suddenly developed double vision and was seen urgently within 48 hours. Good luck.

  • Hi sjrquared, thanks for your response on this. I haven't been diagnosed yet, although a dr that I don't usually see, mentioned this when I saw him for the eye drops and ointment that he prescribed. When I reduce my thyroid meds down, most of my symptoms largely disappear, although my right eye now seems to bulge more than my left which I'm worried about. At it's worst, my eye sockets and they eyeballs themselves are sore when pressed. My worry is that as I have Hashi's that this might be another autoimmune problem. I'm seeing endo in August, so I'll mention it then. I did have an MRI of my pituitary gland at the end of last year, no-one mentioned it then, although it only seems to have developed since the beginning of the year.

  • Just a small comment from an earlier part of this post. You mentioned liqorice addiction which you said had abated. In addition to Hypothyroidism, I also recently developed a bit of high blood pressure, intermittent high spikes. I monitored it for a while, but eventually GP recommended BP meds. Tried one for 2 months (Amlodipine) which didn't do a great deal for my BP but did give me tree trunk ankles on most days. So switched to Indapamide and so far better control of BP and no side effects. However, when looking into BP in more detail to try and help myself without meds, I did find out quite clearly that liqorice is known for raising BP. The only place you find it consistently is in herbal teas, even in those flavours you wouldn't think would need something like liqorice. Just thought I'd mention it as many people with thyroid disorders also end up with BP issues.

    I also have Coeliac Disease, been diagnosed over 40 years, so couldn't say whether gluten free is beneficial for those with thyroid disorders as I've never really known much of my life with gluten in it. One thing I would say is that if you do try going gluten free (and this is reinforced in many thyroid articles) you need to do it 100%. It won't have any benefit if you say just cut out bread, pasta etc (there are now very good gluten free pastas on the market) you need to remove all gluten from the diet to expect any effect.

    Sorry to hear about the TED, that sounds pretty awful to have to deal with.

  • Hi Georgina61. Thanks for your response. I am aware about the ability of liquorice to raise blood pressure and pulse, Thankfully it seems to be reducing and I'm needing less of it. I drink licquorice tea and there are warnings on the box. I also eat licquorice too, although this has been much less during the past couple of weeks, so something must be being addresses now which wasn't before. Just wish I knew what it was.

    I am aware that people with Hashi's do well by going coeliac, but am a bit wary of the difficulties this presents. I'll research though.

    Thank you so much for your advice and support.

  • You're very welcome. If you need any help with the gluten free challenge, just message me but also worth looking through where you will always find the correct information.

  • Thank you. I'll have a look at this. x

  • Hi

    I just wanted to encourage you re trying to go gluten free.

    I went gf in March and I'm staggered how easy it is. Pretty much everywhere has gf, even Pizza Express can do all their pizzas on a gf base with gf dough balls! It's on the menu so you don't feel a difficult customer for asking!

    You can still have rice, potatoes, obviously all meat, fish, eggs and veg. Think what you CAN have rather than what you can't.

    The range of food to buy at home is massive too. I shop in Waitrose and it's easy to buy bread, croissants, biscuits, pasta, fish fingers...

    I keep Doves Farm GF flour and use it for cooking and baking. It's no different and their online recipes work.

    If you go on holiday America is well ahead of the gf game - and surprisingly Italy too. You can get gf pizza, bread and pasta in most restaurants and hotels. Out and about in England, many many teas shops will offer one or 2 gf cakes.

    I'm not Celiac so I don't need to be miss fussy pants, so for eg I don't mind my chips being fried in oil where batter is fried.

    Just try it - you'll be amazed how easy it is.

    And I really feel the benefits

  • Thanks for the encouragement Michelle. I can see I'm going to have to give it a go. x

  • Unfortunately I have to be miss fussy pants :-) On a thyroid website somewhere I did read that if you go gluten free to help with your thyroid condition, its better to do it properly. Its often recommended as gluten is thought to cause inflammation in the body particularly with Hashimotos and even small amounts of gluten will cause similar problems.

    Definitely Italy is as you say surprisingly one of the easiest places to eat gluten free. Some routine testing goes on there for Coeliac Disease.

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