T3/T4 and NDT?

Currently awake with another migraine. Feeling awful, my fatigue is getting worse I'm in bed at nine every-night struggle to get up at 7:30 I need a nap during the day but cannot because of work so I've increased my caffeine to try and keep me awake during the day. After dinner I am falling asleep I cannot take anymore, I am a single parent and completely exhausted. II am taking 5/6 migraines a week now I am currently on 50 mcg of Thyroxine and 25mcg of Liothyronine.

Already asked my gp to ask the endo to up my T3 in February and April of this year, In Feb he decided to up my thyroxine instead to 75mcg after 3 weeks I stopped and went back to 50 mcg due to dizziness and nausea I've not heard back regarding Aprils request so I upped my T3 from 20 mcg to 25 mcg hoping it would make a difference it hasn't. I have bought NDT I was wondering if I could start supplementing my T3/T4 with NDT?

I am about to run out of T3 in the next few days- the pills have to come up from England and take about a week. I last had my bloods done in FEB. I take vitamin B12 under the tongue. I decided I was going to start self medicating as I feel I am going to completely shut down or possibly have a stroke with all the triptan medication I can't go on feeling this lousy and in pain the Drs aren't listening, not sure if they don't believe me or don't care.

I was wondering if I could use a bit of NDT or if I should just stop my T3/T4 combination and go the whole hog and start NDT I am worried about feeling even worse starting at the lowest dose.

22 Replies

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  • Sorry to hear you're feeling so unwell. Sorry I don't know about meds, but for me migraines can be triggered by constipation, dehydration (and caffeine!). Do you drink lots of water and have regular BMs? If not, magnesium citrate can help.

    Migraines and fatigue can also be related to food intolerance so may be worth considering an elimination diet to identify food sensitivities, gluten being the most common but not the only one.

    Have you had tests for ferritin, folate, B12, vit D?

  • Sorry you're feeling so poorly. I get lots of headaches too (often wake up with one) & they make me very drowsy. I take Zolmitriptan if I can't cope with the pain/nausea. Otherwise I try to ignore them. Ironically, one of the side effects of migraine meds is headaches!

    When I upped t3 to 30mcg they got worse, so take 25mcg & no t4. I cannot tolerate Levo at all, even in combo with t3. I'm also gluten free, caffeine free & drink water continually.

    So things aren't perfect but I am copying with the illness & it's not dominating my life. You need to feel in control of your life rather than this illness dictating everything.

    I hope you find the medication that works best for you & there are people here who can advise you about NDT. Don't despair - there is something that will work for you. In the meantime, try reducing your caffeine intake gradually. All the best x

  • Hi tootired,

    Just to say I am currently on combined T3/T4 therapy and in Scotland (guessing you are too) Its taking a long time to get the dose right - I didn't feel much from the T3 for about two months! Its kind of woken me up mentally but I have still have physical fatigue if that makes sense? He's upping my levo dose very slowly, as tests showed that my FT4 had dropped very low. I think they are measuring total T3 and FT4 and, for once, not TSH.

    Are you able to tell us what your blood test results are (with ranges) please? That can really help. If you can get them to test vitamin D, iron and ferritin (in a previous post you say you are veggie - mine was on the floor when I was veggie, you will need iron for conversion) and B12. I was veggie for 20 years and had to start eating meat cos I was so ill (iron and B12 and vitamin D all dangerously low)

    Also years ago, I was put on the progesterone only pill but had to come off it again, due to lots of bleeding and headaches. I actually gave up with synthetic birth control after that and felt much better.

    Best

    Helen x

  • When I switched to NDT I also eliminated grains, dairy and sugar from my diet. No more migraines!

  • I think you need to post your test results for members to comment on and if you haven't had any recent tests for ferritin, b12 and vit D get them done.

    I personally don't see the point in adding NDT to T3 and levo as it contains T3 and T4 anyway so if your combination isn't working then try switching over to NDT.

    Have you had a cortisol test? It would be worth getting everything else in order (addressing any adrenal and/or vit/mineral deficiencies) first before trying NDT.

    x

  • In your shoes I would swap to NDT but split the dose to twice a day early morning and late afternoon ....because it sounds like you cant tolerate synthetic thyroxine

    BUT WHAT levels are your

    ferritin

    folate

    they are important especially ferritin

    never take just B`12 alone must always be taken with compound vit B too

    if you take the methylcobalamin form of B12 then the compound vit B must also be same form otherwise it will cancel out the b12

  • just about to start vitb12 methyl... bought vit b complex to take with it. i am confused now about your comment on compound vit b being same form. could you explain please

  • I think what RFU means is that the vit B12 in your B complex must also be methylcobalamin. Very often it is cyanocobalamin. Also, folate should be methylfolate, and not folic acid. :)

  • Elvera111,

    Most B Complex vitamins have 50mcg cyanocobalamin. It's perfectly acceptable to take this along with larger doses of methylcobalamin and if you have low folate folic acid is acceptable for a few weeks unless you have methylation issues when methylfolate may be better.

  • RFU,

    Some people take methylcobalamin, cyanocobalamin and adenosylcobalamin to treat their B12 deficiency.

  • thanks that's interesting to know

  • Hi,

    Sorry you're so poorly, I hope you find some relief soon.

    The coffee might be part of the issue, rather than a fix, as it'll be affecting your absorption of hormones, so making you worse.

    I went straight to NDT, & can't emphasise how much it has helped me. Perhaps that's the way to go, since you have this already. I think two grains is a little more than your current dose of meds, so perhaps try a bit less, & see how you feel before taking the same amount & increasing.

    M*

  • I agree re b12, d and ferritin - please get tested. Magnesium is a must. I have said before in other posts the best form is Noble naturals nano magnesium - contact me on alison@thehealthworkshop.co.uk if you cannot source. For B12 I use patches - it is in harmony with b complex as it should be. Being transdermal it by passes the guy. The gut is at the root of all autoimmune disorders (IMHO) and imperative you get an intolerance test if you haven't already. In the mean time I would advise you lose coffee, caffeine, wheat, gluten and dairy. Add digestive enzymes to each meal and find a good probiotic. Consider Nutri adrenal extra and Nutri thyroid. They both contain bovine extract so if you are vegetarian (like me) it's a soul searching call. One I gave into. Iodine should be considered as should a high green diet - think adding spirulina, chlorella, wheat grass, barley grass to fresh smoothies and juices - go sparingly in the fruit and always (where possible) organic. This protocol alone has started many on a path to move forwards but it's by no means all you need to do for the journey - we are all different. Good luck 💜

  • Tootired,

    If your ferritin is low it can be difficult to tolerate dose increases until it is >70. Ferritin is optimal half way through range.

    You could try taking 50mcg/75mcg alternate days for a couple of weeks to acclimate as this can be a gentler way of raising dose. Alternatively, when T3 arrives increase dose to 30mcg daily.

    If you want to try NDT you don't need to start low as you are already taking T4+T3. 1 grain (60-65mg) NDT is equivalent to 75mcg Levothyroxine or 25mcg T3. You could switch straight away to 2 grains NDT split into 2 doses.

    It may be worth reducing or stopping coffee consumption as caffeine can trigger migraines.

    _______________________________________________________________________________________________

    I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

  • Hi there

    Before diagnosis I had terrible hormonal migraines (7 day migraine every 14 days). I also found that if I took triptan meds it would be OK for a day or two then come back with a vengeance. So, I got to a point where I would only take them if I absolutely had to. Bounceback migraines are a common problem with triptan BTW.

    So when I wasnt taking triptan I would use syndol plus a muscle relaxant (look up homemade syndol on Internet as they changed the formulation to not include the muscle relaxant). Doesn't work on my first day of migraine as I vomit every 20 mins or so for around 6 hours but means I'm functional for the other 6 days. I use tiger balm on head and neck too but it's smelly so only when I wasnt going out in public!

    I also take feverfew and oat bran daily.

    After a year on levo my migraines were down to 3 to 4 days every 14. I then went onto ndt. This is the real trick. After a year and a half I now have a minor headache with my period and nothing at ovulation. I'm still taking the feverfew and oatbran. If you start to use syndol the oat bran is necessary as it will make you constipated. I try to drink 3 pints of water a day.

    I gave up coffee in 2012 to try and get rid of migraines. It didn't work and I now only have a coffee when I have a headache as it can sometimes stop it in its tracks. I think not drinking coffee makes the caffeine more effective when I do drink it. You will get a headache when you give up coffee.

    There are other meds that you take daily. I tried one before I got diagnosed and it didn't work for me

    So,based on me (you may be different) get thyroid meds right first but also try laying off the triptans as you may be getting one migraine that keeps coming back. Keep a diary of symptoms and see if they're hormonal. If they are evening primrose or starflower oil may help as well as feverfew but the key is getting thyroid meds optimised. If t3/t4 combo not working think about trying ndt.

    Good luck

    I'm not a doctor and this is all based on my own experience. This is not medical advice

  • Forgot to say - I have raw milk daily with the oat bran. Plus when I gave up coffee in 2012 that's when I realised how fatigued I was. I hadn't realised but I'd been drinking around 30 shots of espresso per day to stay awake. So you may find when you give it up that you get more tired. I moved to sleeping 12 to 15 hours per day and spent the next year and a half visiting my previous quacks to say there was something wrong. I was diagnosed at my new GP practice in Aug 2013....

  • I also take T3 & Levo and feel so well it works for me BUT at the moment I am very concerned about the following:-

    PRESCQIPP AND BULLETIN 121 - LIOTHYRONINE.

    You may, or may not be aware that an organisation calling themselves PrescQIPP' are working with local CCG's and the NHS in an attempt to try to save them money. This would be a good thing, but the problem is the WAY they believe they can save the NHS £20 million. This is by removing T3 (liothyronine) from the NHS prescription list. Their Bulletin 121 in which they give details of this makes it sound as if they have the best interest of everybody at heart, especially the patient, but how can this be.

    I have written a rebuttal to PrescQIPP on behalf of TPA, as I found they had not cited one single reference to research or evidence that would back up any of their statements. You can find the PrescQIPP's Bulletin 121 and the TPA rebuttal (which is long of necessity) on the Home Page of our website. I have no idea how PrescQIPP will respond, but what they have taken on has huge implications and members who are being prescribed T3 at the moment should know about these.

    Also, we are getting many reports from members who's GP is telling them they are no longer allowed to prescribe T3 for them. Some claim that a circular has apparently been sent to ~GP's in their area from CCG,s but I have not seen a copy of such a circular. If your GP has told you that he is no longer allowed to continue its prescription, please will you let me know simply giving me the name of your local CCGT. Your name will not be mentioned. We are trying to compile a list of such CCG as this is important.

    HUGE PRICE HIKE OF LIOTHYRONINE BY AMDIPHARM MERCURY (AMCo)

    Liothyronine (L-T3) is a long-established, safe and effective thyroid hormone replacement for those who continue suffering symptoms whilst on L-T4-monotherapy. Liothyronine is of simple construction, and is cheap to both develop and manufacture.

    Branded medicines are subject to price regulation. Up until 2007, the price of the brand Tertroxin therefore remained stable at £15.92 for 100 tablets. However, it does appear that the brand name Tertroxin may have been removed by the present owner Amdipharm Mercury Ltd., (AMCo) in order to by-pass price regulation. The product is now marketed as generic liothyronine. In March 2016, the cost of liothyronine had risen to a staggering £922.44 for 100 tablets (based on 28 tablets at £256.20).

    Generic drugs are, in theory, subject to competition. The UK liothyronine is therefore no longer subject to price regulation. Amdipharm Mercury Ltd.( AMCo) have written to TPA stating that their UK liothyronine formula is “unique and not interchangeable with other products in the market”. However, there is NO competition. The Department of Health appear to have handed the monopoly of manufacturing and selling liothyronine in the UK to Amdipharm Mercury Ltd. (AMCo). Resultantly, there is thus NO competition. Incidentally, President Obama became involved in a similar case in the United States. [205]

    Doctors can no longer write the brand name Tertroxin on a prescription form. They have to write instead liothyronine’. As a result, the NHS local CCG’s are writing to doctors advising that they should no longer prescribe generic T3, because of the huge cost to the NHS, and are recommending that they prescribe levothyroxine as an alternative. The consequences of this can be devastating to those approximately quarter of a million patients in the UK who need T3, as can be ascertained from the evidence given above.

    Given the seriousness of the matter, and also considering PrescQIPP’s ‘OBJECTS’, an investigation into the reasons for why the cost to the NHS has been allowed to continue rising, should be the first priority. Investigation into this matter should also delve into why there was no action taken by the Department of Health, and/or the MHRA, despite them having been approached by numerous MP’s asking for an explanation. The potential for devastating effects on patient’s lives should also be recognised, and a case for medical negligence should be given consideration.

    It is of great concern that AMCo have countered that their ‘generic’ UK liothyronine is “ in fact “unique and not interchangeable with other products in the market”. The MHRA, and British Generics, inform us that generics that are NOT interchangeable MUST HAVE A BRAND NAME. A previously mentioned, the brand Tertroxin was removed some time in 2007, resulting in the product being marketed as generic liothyronine instead.

    "A generic medicine contains the same active ingredient as the equivalent original branded drug, and is marketed once the originator's patent protection has expired. Generics are authorised to the same standards of safety, quality and efficacy as original branded drugs, and have to demonstrate in clinical studies that they are bioequivalent to the original product: i.e., they deliver equal medical benefits to the patient.

    Generic medicines are therefore normally interchangeable with the equivalent branded drug. On the rare occasions where this is not the case, the MHRA (Medicines and Healthcare products Regulatory Agency) requires generic medicines to have a brand name so that patients may be maintained on a single manufacturer's product."

    It is of great concern that in Europe, the cost of L-T3 is a mere fraction of what it costs in the UK.

    Sweden - 100 tablets of L-T3 = £21.10

    Finland - 100 tablets of L-T3 = £15.81

    Norway -100 tablets of L-T3 20mcgs – NOK 254.50 = 27.51€ = £21.65

    Denmark -100 tablets of L-T3 20mcgs – Thybon 20 Henning = DKK 190 = 25.53€ = £20.09

    Germany - 100 tablets of L-T3 20mcgs -30.15€

    Turkey -100 tablets of L-T3 – Tiromel = £1.25 (info. from private correspondence)

    UK - 100 tablets of T3 - Liothyronine = £922.44 (based on 28 tablets at £256.20)

    THE TIMES HA VE GOT THE STORY - 3 JUNE 2006'

    'EXTORTIONATE' PRICES ADD £260M TO NHS DRUG BILL.

    There was a massive story in The Times Newspaper yesterday and, I am told, in The Times today too. There is a full feature article covering the whole of page 1, more on Page two, and on Page 6 and 7 is a double page spread, featuring, in particular four pharmaceutical companies that are involved. Of course, Amdapharm Mercury (features strongly).

    THIS IS SO WRONG!

  • Have you had a full thyroid panel? If so, what are your FT3, FT4, and TSH at? I do know that when I was hypothyroid, was the only period in my life where I've had one headache after another.

  • Hi Guys thanks for all your replies, I think I need to get my bloods test done again and ask to get my selenium and iron checked.

    I've done the elimination diet I've cut out caffeine, chocolate etc in the past, wine for over a year, I was gluten free for almost 2 years it didn't make a blind bit of difference to the migraines. I am currently using a migraine app to track possible triggers etc, for me caffeine is one of my protectors I do need it but I do freely admit I have been relying on it too much lately.

    Pain relief I take naproxen 500mcg and Zolmitriptan 2.5mcg.

    I have been on the progesterone pill since December 2014 Periods stopped about 2 months later, the menstrual migraines were horrendous with very heavy bleeding I'm glad I don't need to go through that but have wondered if the pill has made the migraines worse?

    My last results were in Feb 2016 :TSH was 9.6 down from 14.8 in November 2015

    TSH 3.73 down from 4.42 in November 2015

    Cortisol was normal- no figures given

    Vitamin B12 was 499 . I can't remember what my iron was Dr said all normal no need to supplement. I have previously taken multi vitamins, magnesium and vit b12 combinations, tried 5 HTP, Feverfew, BLack cohosh, and many others in an attempt to relieve my migranines. I drink a hell of a lot of water not far off 3 litres some days as the migraines can leave me very dehydrated I was constipated until about 6 weeks ago. That's been about 3 months I've been on 25mcg of T3 with 50 mcg of T4, I expected to feel much better been on combination therapy since December 2016.

    in OCT 2014 I paid for hormone testing the results were:

    Estradiol (saliva) 1.7 range 1.3-3.3 premenopausal

    Progesterone (saliva) 142 pg/mL 75-270 premenopausal

    Ratio Pg/E2 (saliva) (Saliva) 84 Optimal 100-500 when E2 1.3-3.3pg/mL

    Testosterone (saliva) 45 pg mL16-55 (AGE DEPENDANT)

    DHEAS (saliva)10.4 ng/mL 2-23 (age dependant)

    Cortisol (saliva) 9.4 ng/mL Morning 3.7-9.5 (morning)

    Cortisol (saliva) 0.6 Night ng/mL 0.4-1.0 (night)

    Thanks

  • I am a person who changed to NDT overnight (from a synthetic) and I would recommend this to anyone. The change from my terrible symptoms was miraculous, they all disappeared within 20mins of my first dose of NDT (Armour thyroid).

    Also, your TSH is still in a range which indicates you will experience hypothyroidism. Your TSH should be less than 2 to be hypo symptom free. Mine is < 1.0

  • I suffered migraines for a long time. They completely disappeared when I increased my B12 and magnesium supplements. That was actually BEFORE I had thyroid surgery and so was not yet on thyroid medication.

    Also, I added NDT to Levo for a while when the DR wouldn't increase my dose and felt loads better for it. Am on NDT only now. Still tired but improving - 'migraine' is hardly even in my vocabulary now. Hope you get sorted.x

  • Also - completely gluten free!!

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