I’ve been on liquid thyroxine for 6 weeks now. I was advised to change from NDT by my private Endocrinologist. I must admit I have struggled to get my TSH right on the liquid. I will be having my bloods done early next week to check if my TSH is back in range. It did go from 3.99 on NDT to 24 in 12 days during my switch. So it’ll be interesting to see what my results will be after 6 weeks. I feel awful. I’m swaying about and suffering terrible headaches, I never suffer with headaches normally.
My heart rate has gone up significantly too. From resting rate of 58 to 76. I only take 75 Levothyroxine.
Just wanted to ask if anyone has had a heart rate increase in such a low dose.
I have been prescribed blood thinners this week too as my legs tested positive on a Doppler test for poor circulation
Many thanks,
Pam
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McPammy
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Usually when we're on an insufficient dose of thyroid hormones (levo etc) our heart rate can struggle because it and the brain need the most T3. Levo is T4 and inactive and it has to convert to T3 (liothyronine).
NDT is the oldest form of thyroid hormone replacements, used safely since 1892 and from then on people didn't die of a myxedema com, so I think your Endo probably is one who reads the BTA statement upon its instability but this is untrue and they've made False Statements about it too. Just so it was also withdrawn thus reducing another safe thyroid hormone replacement - one which contains all of the hormones a healthy gland would do making the only prescription replacement levothyroxine which I and others cannot abide so forces people to source their own life-giving hormones.
I have found out recently that I have high blood press when I take thyroxine. It doesn’t matter if it’s Levo or NDT. My GP gave me blood thinners as I had a positive Doppler test on my legs. But my heart rate went very high for me. I’m normally 59 on 75 Levo. However with the thinners it’s was 115 resting yesterday!
When I was 'new' to hypo and on levo my heart burst into activity all the time,: when at work (nurse called ambulance) and anywhere and everywhere. I had no clue what was going on and had to see the cardiologist.
I found that if I sipped ice-cold water and sometimes had to wrap ice-cold towels around my neck it reduced my pluse. Endo was puzzled about those symptoms as I had heart checked often and was considering putting an implant in heart to record..
When T3 was added to T4 it relieved all palpitations and never saw Endo again. I kept meaning to write and tell him but life took over and I never did.
I’m getting my bloods done on Monday T3,T4,TSH. So from those results I can see where I need to go next with my medication. It may be that I’m not converting very well too.
Is it FT4 divided by 4 to give you what your T3 should be please?
Thanks for your valuable support. Without this site I just don’t know where I’d be and the fabulous people willing to help.
Did you allow a 24 hour gap between last dose and test?
TSH is too high - the aim is 1 or lower.
T4 -is high as you are taking levothyroxine (T4)
T3 -bottom of the range when it should be within the top part.
If we take anything other than levothyroxine, it is how we 'feel' on the dose(s) as dose is gradually increased.
Blood tests were introduced along with levothyroxine alone, i.e. T4 so if we add in another hormone replacement (NDT or T3 etc) they cannot correlate with the blood tests. So it is always about the relief of symptoms - that is the aim and how we 'feel'.
One of our Advisers only took one blood test for the very initial diagnosis and thereafter small increases were given every two weeks (NDT) according to the relief of the patients symptoms. That's the aim, relief of symptoms not bothering too much about where numbers are. The numbers change throughout the day.
McPammy, your doctor should not be dosing by the TSH. You should not be struggling to get the TSH into a place where your doctor is happy, it should be in a place that makes you well. Dosing by the TSH will never stabilise you.
If your TSH was 3.99 on NDT, then you were under-medicated, and your doctor really doesn't know what he's doing. Not surprised you feel bad if your TSH went up to 24, but that was a huge increase. How much NDT were you taking?
Thanks for your reply, it’s so reassuring to hear from you.
Originally I was on 75mcg Levothyroxine. I was having trouble taking it, which no one seemed to understand including myself. I’d be in a bad way on a full dose. My body seemed to rage out of control. Terrible headaches and vision problems also my legs would buckle and I couldn’t walk hardly. I’d been on Levothyroxine for 12 years without much problem only occasionally. I was then changed to NDT 1 grain 60mg. I also had trouble taking my full dose with the same reaction. I tried taking half in the morning and half pm. That worked for me. I then saw a private Endocrinologist in Oxford. He said I need to get off NDT. So he then prescribed liquid thyroxine. I was a bit worried as my previous time in it was not good. I started the liquid. The first 3 days I felt fantastic, while doing half NDT and half Levo. The on day 4 I became very ill. I was taken to A&E. They said my blood pressure was very high. Then the penny dropped. Is it my blood pressure I thought making me feel so ill after taking thyroxine. I got a blood pressure monitor. Checked before , BP ok. Took Levo. Started to feel really bad. Checked my BP it was really high. I did this for a week. Each time my blood pressure increased significantly. Then I looked up blood pressure and Levo. And it’s not to be taken with blood pressure issues. So now I split my dose and I’m ok. I went to see my GP. He did a Doppler test on my legs for blood flow. It was positive. He gave me blood thinners. I took my first thinner yesterday. My blood pressure was high again even though I was splitting my dose. My resting heartbeat was 115. It’s normally 59. I felt terrible. I just don’t know what to do next!!!
A Doppler is to check for blood clots. Did you have any blood clots? Do you drink enough water? I'm not convinced you need blood thinners. High blood pressure can be a symptom of under-medicated hypo.
Did you ask your doctor why he wanted you off NDT and back on levo? You do realise it was probably more for his convenience than yours. Doctors un the UK don't understand NDT. And, for the most part, they are scared of T3. They only know about levo - and not much about that!
Originally I was on 75mcg Levothyroxine. I was having trouble taking it, which no one seemed to understand including myself. I’d be in a bad way on a full dose.
What do you call 'a full dose'? There is no fixed full dose, people need what they need. And, if your doctor was only testing the TSH, he would have no idea what you needed.
Then I looked up blood pressure and Levo. And it’s not to be taken with blood pressure issues.
Where did you read that? If levo is not to be taken with blood pressure issues, but your blood pressure issues are caused by hypothyroidism, where do you go form there? It makes no sense. I've had high blood pressure all my life. Not only did I not feel ill with it, but Levo didn't make it any worse. Now, my blood pressure is normal.
I’m on 75 Levo and have been for a few years now. I was originally on 125. Lowered as TSH was saying over medicated.
The leaflet youget with the warnings on Levothyroxine states:
Tell your Dr if you have problems with circulation or high blood pressure.
I never knew I have high blood pressure until recently.
Are you saying the blood pressure can be caused by not enough thyroxine?
The Doppler was testing for a flow issue. My tight leg is not flowing properly he said that’s why he suggested thinners.
I thought about a cardiologist too. So 2 days ago I’ve booked to see one on 9 Apr. I was hospitalised last year and spent 2 separate times in a cardio ward. First time discharged with posteral hypertension after positive tilt test. 2nd time discharged by an Endocrinologist who then referred me to neurology. It’s tsken months, nearly a year and I’m still not diagnosed.
I think changing my thyroid medication hasn’t helped at all.
If the thyroid med helps my blood pressure I don’t understand why it goes high if I take me full dose of 75mcg in one hit. Do you please? I trust your opinion completely
Thanks again you are being a great help to me. God knows I need it.
TSH on its own doesn't say anything at all. Never allow your doctors to reduce your dose on the basis of a low TSH. You need at least and FT4 tested.
I'm saying that high blood pressure can be caused by hypothyroidism. If you are taking too little levo, then you are still hypo, and therefore still having symptoms like high blood pressure. Therefore, taking more levo will raise your FT4/3 and make you less hypo and your symptoms should start to resolve. High blood pressure included.
Telling you to notify your doctor about existing health problems before he prescribes, does not always mean that you shouldn't take the prescribed medication. But, your doctor needs to be aware so that he can keep an eye on it.
It's not hypo meds per se that help high blood pressure, it is restoring optimal levels of thyroid hormones. I would think that on just 75 mcg levo you are not optimally replaced. You really need full thyroid testing to know more about what is going on.
Also, before taking blood thinners, you ought to know why you have reduced blood flow in your leg. Is it a heart problem? And to know that, you need to see a cardiologist. Cardiologist often know more about thyroids than endos, anyway! So, once you've seen him, you should be in a better position to optimise your thyroid treatment.
I’m so glad you responded to my question Greygoose. Everything you’ve said makes sense. I’ve been so ill sometimes I really thought it was the end, without being too dramatic! I’m going to stop the thinners until I see a cardiology I think. I’m getting my bloods done on Monday T3,T4,TSH, cortisol, calcium, ferritin and cholesterol. Once I have my thyroid figures I will know if to increase my dose carefully. My next Endocrinologist appointment is 11 March and cardiologist 9 Apr (although I’m going to chase for a cancellation). I do feel I’m getting nearer to sorting my health out and starting to see some light from the long dark tunnel I’ve been in.
I can’t thank you enough for helping me understand that the thyroid effects blood press. I just hope I can get an increased dose in me without too much high blood press.
It would possibly help to get your vit D, B12 and folate tested, too. All nutrients need to be optimal for your body to be able to absorb and process thyroid hormones.
You're very welcome to any help I can possibly give you.
Yes, I’ve had vitamin D and it was 98 so repleat. Folate was also above the range but can’t remember the figure just now. My B12 was under at 132 but after loading it’s now 1500.
Thanks a Greygoose, you’ve made me feel reassured x
My private Endocrinologist said he wanted me off NDT as it is not physiological. He also said it’d do me harm in the long term.
He is the highest clinical Endocrinologist in the UK?? Or supposed to be. It’s been a very expensive and exhausting time for me to be sure.
Yes I drink water. I’m trying to drink more. Last year I had all the symptoms of peripheral vascular disease. Tingling legs, brittle toe nails, b12 def, weak legs and now I also know high blood and low blood press. I have only just come across this disease myself. I even had an ulcer that I didn’t know what is was. I’ve got better but still wobbly and very bad headaches and double vision.
Before having my thyroid removed in Oct 2015 I was extremely well and on no medication. I only had it removed because the lump started to interfere with my breathing. I was then started on Levo it made me so ill I had gone from swimming, yoga and walking miles to not even being able to get off the floor without help.
After 8 months I joined this site and started self medicating with NDT following the advice on here. When I was on Levo for 8 months I had seen two Endos who were both useless.
Now I feel well again on NDT and am back doing my Yoga and walking. I never ever visit the GP and certainly not any Endos, they all kept me feeling very ill.
I am 72 years old so living proof that following the good advice on this very site
My private Endocrinologist said he wanted me off NDT as it is not physiological. He also said it’d do me harm in the long term.
That is a stupid excuse. It really means that he just doesn't know anything about it. It takes him out of his comfort zone! Highest clinical endocrinologist means nothing. If his training is NHS he still knows little about thyroid. He's probably a diabetes specialist.
I understand what you have said entirely. I was referred to my private Endocrinologist from a person on this site. After months of not knowing where to turn I took their advise. It’s been costly and made me very ill going back to Levothyroxine. I agree with you. Yes, I had my B12 tested it was 132 I had deficiency. I had 6 loading shots and now on 3 monthly shots. It’s now 1500!
I also had low ferritin at 15. I’ve been on tsblets and due to have my bloods done again next week to check lots of levels.
Yes, it's amazing that how an endo can be brilliant with one person, and very bad with another. But, it does depend on so many things. We're all so different in so many ways. I saw one doctor that was highly recommended by so many people, and I got on with him very well. I recommended him to my son, and my son thought he was awful! So, there's no knowing, just because a doctor comes highly recommended.
Good that you're having B12 shots. But, are you also taking a B complex? All the Bs work together and need to be kept balanced. And, the methylcobalamin in a good B complex would keep you topped up between shots.
Did you get tested to see if you had Pernicious Anemia? Or is it just an absorption problem? If it's poor absorption - which it probably is if your ferritin is also low - then it would be good to look at your gut - is it leaky? And your stomach acid - is it low?
It will be interesting to see your results when you've had all your levels done.
I have seen several endos since being diagnosed with Hashimoto's in late 2000, and they have all been useless. They have told me the TSH is all that needs to be tested, that T4 will automatically convert to T3 (one even told me the thyroid gland does not produce any T3 but that all T3 comes from T4 conversion!) and that no remaining symptoms were caused by hypothyroidism because my TSH was "optimal". They even refused to test my free Ts, something GPs usually do (I'm not in the UK) even though they cannot interpret the results correctly.
I don't know why endos seem to know so frighteningly little about thyroid disease, but I have personally never come across a single one worthy of the name...!
Your endocrinologist is obviously unaware that NDT has been in use since 1892.
I think it is called a 'grandfathered' replacement hormone.
It saved lives. No blood tests were necessary as doctors knew all the clinical symptoms as before 1892 we just died an awful death. That's where 'modern-day diagnosis fails i.e. knowing any clinical symptoms and only diagnosing if TSH rises above 5 (if someone is lucky - not wait till it was 100 in my case).
NDT is still used today but Big Pharma saw money, money, money to be made by persuading doctors through monetary incentives to try the 'new method' i.e. blood test and levothyroxine (T4 only) and they make millions worldwide I should imagine.
I don't think they can patent NDT and it does contain all of the hormones a healthy gland would do, so even if we knew absolutely nothing about thyroid hormones but gave someone a selection, what would our instinct choose:
Levothyroxine - a synthetic inactive hormone also called T4.
NDT - natural dessicated thyroid hormones made from pigs or cows thyroid glands. It contains, T4, T3, T2, T1 and calcitonin.
T4 - has to convert to T3
T3 - active needed in our millions if not billions of T3 receptor cells.
Yes I totally agree. I was on NDT for 5 months. I felt better but still not right. Maybe as my T4 was very low at 6.00 with range of 7.86-14.41. I only need either 1 grain 60mg NDT or 75mcg Levothyroxine. Maybe the low dose of NDT requires a little Levothyroxine to balance things out?
I can only agree with Greygoose!!! I spent years on T4 only, taking the dose that kept my doctor happy (now, I know that was a dose keeping my TSH in range) but never made me feel well. Many hypo symptoms remained despite "an optimal TSH". Please don't accept lowering your dose simply because of your TSH!
I don’t want to reduce my dose. I just want to sort out my blood pressure and get well. It seems I have a circulation problem on top of my thyroxine being managed poorly. I spent 11 years on Levothyroxine and always had problems, about every 6 months or so. Then the past year has been horrendous for me. I load to give up my brilliant job as I just could not walk or stay steady. Along with many other symptoms too many to list.
I really appreciate your comments. This site and the people are brilliant.
To me, all of your symptoms, including - and especially - high blood pressure, are indicative of LOW metabolism, meaning you are under medicated and should not take less but, most likely, more thyroid hormone.
I really hope you find a way to feel better so you can keep your job!
And I agree with you, this site is a goldmine of information and its members wonderful
I'm really sorry to hear that! I hope that you will get the help you need from members here and manage to sort things out eventually. It can take time, but please don't give up, ok?! There is so much knowledge and expertise available on this forum!
Nice weekend to you too! You can get there, I know that, but it can take some time depending on all your hormonal imbalances. Unfortunately, many conventional doctors are no good when it comes to correcting and treating these. Personally, I trust the advice on this forum more than the advice of most doctors, so don't give up! I am sure many members will be able to offer you helpful advice. You may have to self-diagnose and self-treat at some point (as I and many others have had to do) but that is usually no problem once you know what to treat...before you get there, just try to get as much advice as possible from members here, find out what works for you and what doesn't, and take it from there. I know that sounds easier said than done, but sometimes, when doctors fail us, we need to look elsewhere for advice, help, and treatment.
OK, so in that case, you're not converting well. Your FT4 is up the top of the range and the FT3 right down the bottom, so you could benefit from reducing your levo slightly and adding some T3.
Excellent. I thought so. I said this to my Endocrinologist last May. My figures were about the same as yesterday. That’s why I felt better in NDT then.
Hi McPammy, I had a total thyroidectomy and spent a few years on Levo. My systolic blood pressure (BP) jumped 20 points immediately (from 120 mm/Hg to 140). About 5 years in I wised up a bit on things thyroid and changed to NDT. I began to experiment with dose to the end of feeling super well. I discovered that as I raised my dose (or introduced a little T3 only at one point) I found that more thyroid meds increased my BP. I lived with raised BP (the 140) for many years until, as I got older, it started to occasionally reach 170. While I had resisted BP meds for years, that scared me and I finally took a BP lowering med from my doc. He gave me Lisinopril and I take one little 10MG pill per day and find it works just fine. I am back to 120 and have no side affects. I don't feel any difference physically but at least I know that my BP will not suddenly peak beyond the capacity of my "pipes" and burst one.
I’m sorry to hear of your journey and the troubles you’ve been through with your BP and thyroxine. I’ve inky just realised about my blood pressure ! I think it’s been going on for years and the past year has got a lot worse. Maybe as my medication has been changed by Endocrinologists a few times. I’m checking my BP about 3 times a day now. Just checked it and it’s slightly high before I Take levothyroxine. With my BP my eyesight is terrible. Double vision at times, blurred and terrible headaches like I’ve never had. I never suffer from headaches before this year, just now and then.
I’m getting my bloods done on Monday so I’m very interested to see what they are. And to then reevaluate my dose. If I try to take my whole dose which is only 75mcg my BP goes high and I have lots of terrible symptoms. This includes my eyes, head and legs buckle. It’s very scary as I often fall on the floor and can’t get up. If I lay there for say 20 mins I can get up. Must be my BP levelling when laying flat. Then other times my BP is too low. Can I ask if BP tablets regulate both high and low BP please. I’m seeing a cardiologist in Apr to discuss and see if he/she can help me.
It’s all a nightmare and I just want to be myself again. I’ve never been this unwell ever in my life and I am now 60. All Drs have drawn a blank and I’ve had hardly any help. Except Endocrinologist changing my medication type, which throws me off balance for months.
Sorry for letting all this out. It’s so damn hard.
Thank you for taking time to answer my question it is truly appreciated. I do hope you keep on a level and you have a good weekend. I hear your story and hope mine has a similar outcome.
Wow, you raise some really interesting points. My first opinion is that no, BP meds do not fix both ends of the scale. When I go to the docs I seriously suffer from white coat effect, my BP goes up every time and he tells me to double my dose! I think to myself, "No, I am doing perfectly well on one pill, I am not going to fall on the floor in the supermarket before you realize that 2 pills would be too many!" My pill, Lisinopril, does not act in a linear fashion, it reaches a peak at some point and that is when I have very low BP ~110/x, that is when I make sure I am not dashing around in a state of high stress.
I had eye problems too and it was a short bout of double vision that got me running to the docs immediately for the BP reducer. I know very little about BP pills and had no idea which one to ask for but this time, to his credit I think he did the right thing first time.
Now, it is a pity that you haven't got your thyroid dose stabilized first because you now have two tricky problems sloshing around, one driving your BP up and the other dragging it down. You have to make one stable and I would suggest you go for BP first, get that right, meaning no headaches nor double vision - because that is serious. Do it with the least medication you can, i.e. don't move into the falling on the floor zone, that's too much medication. After that, start working very slowly on your thyroid meds - in whichever direction that takes you and blood tests for FT3, FT4 and TSH will tell you which direction. In the mean time work on getting your vitamins up to par D, B12, Folate, Ferritin, Selenium (there are more exhaustive lists all over this forum) and I think CoQ10 helps with the heart situation, I take it but I am not sure what it does!
Anyway, keep us posted, this is a problem which is closely allied to T3 which is a hormone all thyroid sufferers desperately need.
Thank you LAHs! That’s really a great help. My eyes are suffering. The past 2 evenings my left eye has pain behind it and my vision is poor. The TV lights, for first time ever, are having a bad effect on my eyes. So I got out my sunglasses and wore them both nights, that helped a lot. Today my left eye is pulling. I just find my BP which is 98/77.
This is before any Levo (I only take half a dose in the morning and half in afternoon as it pushes up my blood pressure if I take a full dose these days).
I’ve got an appointment with a cardiologist but not until 9 Apr. I’m going to try and bring it forward if I can.
Thanks about the BP medication. I know absolutely nothing on how it works. I don’t feel the blood thinners are tight for me as my BP was 138/113 when I took it. I know that’s not very high but for me who has a lot of low blood pressure it feels too much.
I’m getting bloods done tomorrow and see what that brings.
Thank you so much for being so lovely and supportive. I find it hard as I live alone with not a lot of people to confer with on my health.
I have been on the floor several time but not fainted no Dr seems to be able to figure me out yet.
First assuming that there is no malfunctioning of the heart itself, the overriding objective is to make it easier for the heart to push blood around the body. The heart is the pump and the media for conducting the blood around are the arteries and veins – what I will call the “pipes”.
The heart supplies the pressure to do the work and pipes offer, by their very nature, some resistance. If the resistance becomes too great due to getting clogged up or getting stiff with age then the heart will compensate by increasing it’s pressure. Too great a pressure may cause some parts of the pipes to rupture.
To reduce the pressure we can either thin the blood (reduce its viscosity), make the pipes more flexible or reduce the flow of blood.
There are three main ways of doing this:
You can remove some of the water out of your blood with a diuretic, this reduces the volume of liquid in the pipes and therefore reduces the flow – and hence the pressure required to drive it. Some would add reduce your salt intake to this category but don’t reduce it too much since salt is the main ingredient of the body’s electrolytes and you need that for your heart cells to contract.
We can reduce the ability of the body to generate a hormone which causes the blood vessels to tighten after the initial push, these are the ace inhibitors. This gives the pipes more time to stay open and for the blood to travel through (they expand when the blood is first pushed out then relax or tighten as the pulse dies off) and hence less work for the heart to do (and therefore lower BP). Btw, ACE is an acronym for a very long organic chemical – a bit like saying DNA, we all know what it is but rarely spell it out.
Working from the heart end we have beta blockers. These slow down the heartbeat and keep the heart from squeezing hard. This reduces the pressure directly and makes blood go through the pipes with less force.
Now there are many more variations on those themes and you can Google long lists of what they are and how they work but those are the basics. I have not covered what to do if the heart itself is the cause of the problem, that is another story altogether and mostly a mechanical problem, it’s “fix the pump” or get a new one. There is another very important factor which doesn’t require medication and that is to reduce your mass (i.e. lose weight) that will reduce the total path of the pipes and therefore less distance for your heart to drive the blood through.
But anyway I had better stop gabbing, hope this helps.
Thank you sincerely for this information. It’s invaluable.
I’ve read and completely understand what you’ve said.
I don’t know for sure what my problem is and why I keep collapsing without fainting. Same thing happened again this morning. I took my BP when I recovered and it was high again. I managed to get my 9 Apr appointment brought forward to this Wednesday afternoon using a cancellation spot. I also have a telephone appointment booked with my private Endocrinologist on 11 Mar. I’m at the blood clinic right now and hopefully will have results tomorrow or Wednesday latest which would be good for cardiologist on Wednesday too.
Thank you once again. You are a star.
I will let you know if any significant news if that’s ok.
Hi. Yes I read it this morning. It is of great interest to me. Tomorrow I am seeing a cardiologist. I’m hoping to get somewhere. I’ve been in a terrible state for 11 months. Also have an appointment next week with my private Endocrinologist. So with the two hope to finally get somewhere now.
Thank the lord for this site. Without it I don’t know where I’d be!
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Liquid thyroxine 
Resting heart rate on NDT?
