Recently reduced my Levothyroxine and now I'm absolutely freezing. For the past 4 years it's been trial and error to stabilize my levels and have gone from 50 to 100 to 125 to alternating days of 100/75mg and have recently reduced it to 75mg daily. After 2 weeks on this dose I am now so cold that my face throbs after standing in a hot shower. My nose and limbs are even cold to touch. What should I do?
Levo, Hypo and ice in my veins.: Recently reduced... - Thyroid UK
Levo, Hypo and ice in my veins.
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49 Replies
•
it would help if you could show your latest TFT results before advice can be given. 🙏
• in reply toSarahJane1471
Hello and thank you for your response. Unfortunately I do not have any of that information because atm it is very difficult to have a face to face consult with a Doctor in my area. I placed 57 calls and finally got through and begged for bloods to be done. When the results came back I received a message to pick up my prescription for a reduced dosage. Seriously! I am getting my bloods done again just before Christmas so will have to wait until then to get more information. Thats our wonderful drowning NHS. Again, thank you for replying to me.
Sparklingsunshine• in reply to
Unfortunately there's not much advice we can give you unless you can post your latest thyroid results. It would be foolhardy trying to second guess what they are. You can request the receptionist prints them out for you. Failing that you could do an at home private fingerprick blood test.
The NHS only ends to test TSH these days, FT4 if you're lucky. For an accurate picture we also need FT3 as well, but this is rarely tested.
Its your legal right and your GP doesn't need to be involved. Does your surgery have an email or messaging service you can use, rather than phoning? I tend to email mine now if its admin stuff. Saves both time and sanity 😄
• in reply toSarahJane1471
Also , sorry for the same response to you all. I dont know how to do a group response.
Bwil welcome. It would help members give measured responses if you could tell us what is fluctuating and making you change your dose. It would help even more if you could give us actual tests.Levo dose should be based on symptoms plus the levels of free t4 and free t3. However many doctors base the dose on thyroid stimulating hormone level TSH. TSH is a poor measure to go by and often rests in folks being undermedicated.
You are entitled to know your blood results so ask for the figures then we can help
• in reply toLalatoot
Hello and thank you for your response. Unfortunately I do not have any of that information because atm it is very difficult to have a face to face consult with a Doctor in my area. I placed 57 calls and finally got through and begged for bloods to be done. When the results came back I received a message to pick up my prescription for a reduced dosage. Seriously! I am getting my bloods done again just before Christmas so will have to wait until then to get more information. Thats our wonderful drowning NHS. Again, thank you for replying to me.
Buddy195Administrator
Welcome to the forum BWIL,
So we can offer better advice, can you tell us more about your thyroid condition, eg when you were diagnosed, plus blood test results (with ranges in brackets) for:
TSH
FT3
FT4
Plus any antibody and key vitamin tests (ferritin, folate, vitamins D and B12)
If your GP is unable to complete all the above (eg if TSH is within range, some surgeries may not be able to access FT4 and FT3 tests), you could look to do this privately, as many forum members do, for a better picture of your thyroid health:
thyroiduk.org/help-and-supp...
• in reply toBuddy195
Hello and thank you for your response. Unfortunately I do not have any of that information because atm it is very difficult to have a face to face consult with a Doctor in my area. I placed 57 calls and finally got through and begged for bloods to be done. When the results came back I received a message to pick up my prescription for a reduced dosage. Seriously! I am getting my bloods done again just before Christmas so will have to wait until then to get more information. Thats our wonderful drowning NHS. Again, thank you for replying to me.
if you are able, I would consider testing levels privately, as many forum members (including myself) do. This ensures you get all thyroid tests, antibodies and key vitamins tested. I use Medichecks, which are often discounted on Thursdays so may be worth a look.
SlowDragonAdministrator
What were thyroid results when on 125mcg
ALWAYS Test thyroid levels early morning and last dose levothyroxine 24 hours before test
Never agree to dose reduction unless Ft3 is over range
Essential to test vitamin D, folate, ferritin and B12 at least annually
Reducing dose levothyroxine frequently results in lower vitamin levels
Low vitamin levels tend to lower TSH
GP should not dose by TSH
Aiming for Ft4 and Ft3 at least 60-70% through range
Often TSH will be low/suppressed when adequately treated
Which brand of levothyroxine are you currently taking
Many people find different brands are not interchangeable
Teva brand levothyroxine upsets many people. Teva is only brand that makes 75mcg tablets
Lastly…..do you have autoimmune thyroid disease also called Hashimoto’s usually diagnosed by high thyroid antibodies
Bloods should be retested 6-8 weeks after any dose change or brand change in levothyroxine
• in reply toSlowDragon
Hello and thank you for your response. Unfortunately I do not have any of that information because atm it is very difficult to have a face to face consult with a Doctor in my area. I placed 57 calls and finally got through and begged for bloods to be done. When the results came back I received a message to pick up my prescription for a reduced dosage. Seriously! I am getting my bloods done again just before Christmas so will have to wait until then to get more information. Thats our wonderful drowning NHS. Again, thank you for replying to me.
When the results came back I received a message to pick up my prescription for a reduced dosage. Seriously!
What time was test done
Was last dose levothyroxine 24 hours before test
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
Link re access
healthunlocked.com/thyroidu...
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
Important to see exactly what has been tested and equally important what hasn’t been tested yet
come back with new post once you get results
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
Testing 6-8 weeks after dose change or brand change in levothyroxine
• in reply toSlowDragon
OK I shall try and get through again and ask about the online service and hopefully get the information I need to come back and ask again. Thank you so much.
You will see on here 1000’s of U.K. patients test privately to make progress
Examples of Medichecks results
healthunlocked.com/search/p...
Examples of Blue Horizon results
healthunlocked.com/search/p...
Monitor My Health results
healthunlocked.com/search/p...
Only do any test 6-8 weeks after any changes in dose or brand of levothyroxine
Or after any other significant changes, eg starting or stopping HRT, gluten free or dairy free diet, improving low vitamin levels etc
If you haven’t had both TPO and TG thyroid antibodies tested for autoimmune thyroid disease you need to get tested
Which brand of levothyroxine are you currently taking
Unfortunately some NHS GPs do not discuss things they merely dictate what meds you can have based on TSH results. Don't even double check them.
66olives
Then you need to change GP/surgery /endocrinologist
Getting full thyroid and vitamin testing done privately frequently necessary to make progress
Yours is such a common tale. 😢
I’m so sorry, it’s absolutely rubbish isn’t it? I think those of us who’ve responded here all suspect that your doctor is dosing you according to the number that came back on your TSH blood test. When actually, that’s terribly unreliable as a guide to levothyroxine dosing. Doctors should look at FT4 and FT3 results as well. I can guess, without seeing those results, that they weren’t actually high in their laboratory reference ranges and therefore you shouldn’t have had your dosage reduced. Yes, that’s a guess, but it’s incredibly unlikely you needed that kind of reduction—75mcg is only one step above a starter dosage for hypothyroidism.
I know it’s an absolute nightmare to get through to GP surgeries at the moment. But I think you need your dosage raising again.
It might be worth calling and simply leaving a message to ask for your dosage to be increased again because it’s obvious to you that you are now on too little thyroid hormone replacement.
Did you feel over medicated when your dosage was reduced? Or the opposite—did you feel undermedicated? Was that why you made an appointment?
• in reply toJazzw
Hi Jazzw, I did feel overmedicated and was tested and thats why they reduced it. I swear I can feel every microgram as it reduces. Flushing, increased anxiety, major hairloss and insomnia were some of the symptoms. Doc said she couldnt understand what was going on with me as Im now hyper after being hypo for years ??? Ive gone from overheating to being so cold its exhausting. But, as I said, I shall try and get through and ask about my levels.
Just to add, our practice doesnt offer online services that allow you to get results. They are using the pandemic and understaffing as an excuse. They are so behind the times.
Jazzw• in reply to
Quite often doctors are quick to seize on the evidence of a low TSH to explain symptoms. And sometimes they’re right to—it can be a sign of over medication. It very often isn’t though, especially if you’ve been stable for years.
You may have autoimmune thyroid disease (often referred to here as Hashimoto’s) which has a habit of flaring up from time to time and allowing normally knackered thyroids to suddenly pump out more thyroid hormone than they’re used to pumping out.
But counter-intuitively, symptoms of over medication can be very similar to under medication. All the symptoms you’ve mentioned there can be symptoms of under medication.
If you are actually undermedicated the chances are your iron levels are low (which can result in hair loss and increased anxiety and feeling cold). Your B12 and folate and Vit D levels might be low too (low Vit D causes unexpected sweating).
I don’t know your age or gender so apologies for the guesswork but sometimes “stable” hypothyroidism can become very unstable when other hormone levels drop as we age.
So email/go in and request printed copies of test results from when on 125mcg levothyroxine
And more recent test results too obviously
Was test always done early morning?
• in reply toSlowDragon
Ok I shall. Thank you
Just to add, you have the right to see your blood test results. Ask the receptionist at your surgery to print you off a copy of them (or ask if you can have online access to blood test results, even better—many surgeries offer this service now).
When you’ve got them do please feel encouraged to post them here for comment—we see so many thyroid blood test results here many have become experts at accurately reading what they really mean!
Good luck—hope you get through.
Hello BWIL and welcome to the forum :
There is no information on your profile :
What were you originally diagnosed with to have ended up on T4 - Levothyroxine ?
Was it a thyroid auto immune disease ?
You can arrange your own blood tests if you wish - we all tend to end up doing this as the NHS generally only run a TSH which once on any form of thyroid hormone replacement is the least important of all the thyroid blood test available.
If you go into Thyroid UK - the charity who support this forum - thyroiduk.org - there is a page full of private companies who can run blood tests for you.
Blue Horizon and Medichecks between them, cover the country, and can usually offer a nurse home visit to draw your blood if you choose an advanced full thyroid panel which is around 10 different analysis and the full information we generally ask for in order to offer you back considered opinion, help and advice.
At the other end of the scale there is Monitor My Health - a NHS recognised laboratory who offer a postal, home testing finger prick blood test kit if you just want a basic TSH, Free T3 and Free T4 blood test
T4 is a storage hormone and needs to be converted by your body into T3 the active hormone that runs your body and your ability to convert the T4 into T3 can be compromised by inflammation, antibodies and non-optimal levels of ferritin, folate, B12 and vitamin D. which are all analysed in an advanced full thyroid blood panel.
Once with the answer simply start a new post with the results and ranges and you will be talked through what it all means and what you can do for yourself to get back on track.
No one needs that ' ice ' running through their body, though many on here will know exactly what you mean as it's just one symptom of hypothyroidism when not optimally medicated.
Within the Thyroid UK website you can read further on all things thyroid and there is also a list of symptoms which you might find interesting.
Arrange any blood test as early in the morning as possible, fast overnight just taking in water, and take your T4 for that day after the blood test - ideally you need to take the blood around 24 hours since your last dose of Levothyroxine.
If taking any vitamins and minerals leave them all off for around the week previously so we can see exactly what your body is holding on to.
• in reply topennyannie
Thank you. It was Underactive thyroid about 25 years ago. I really cannot remember the actual timeline. Most recent blood tests regarding vitamins were all 'fine'. I shall persevere.
pennyannie• in reply to
I'm afraid ' fine ' is an opinion and not a fact and means nothing :
We need results and ranges - which will be explained to you, line by line :
You are on a massive learning curve but don't worry - it will all become clear as you read other peoples posts and the answers offered as we have all been there and now come back on here to give back to others and this is what makes this an amazing patient to patient forum :
Most recent blood tests regarding vitamins were all 'fine'.
Again you ALWAYS need actual results
NHS only tests for deficiencies, not fo4 optimal levels
Eg vitamin D is
Deficient below 25nmol
insufficient below 50nmol
Optimal above 80nmol …..and around 100-125nmol may be better
B12 range on NHS is typically 180-680
Unless below 180 GP would class as “fine”
Interesting that in this research B12 below 400 is considered inadequate
healthunlocked.com/thyroidu...
How other member saw how effective improving low B vitamins has been
healthunlocked.com/thyroidu...
Lower vitamin levels are are much more common as we get older, especially after menopause
I am so sorry. I can't take synthetics at all, the preferred route in the USA. I got a natural path doc about 7 years ago, and I have to pay him out of pocket as he takes no insurance. He used to be a General Practitioner, but quit because big pharma and insurance run everything here. He put me on NatureThroid, natural desiccated (pig) thyroid. That worked wonders, until the formula changed, and began to be impossible to find. The pharmacy put me back on synthetics, and I went downhill fast. First sign: being super cold, cold-sensitive. Could NOT get warm, and I was doing calisthenics to try to raise my body temp and energy levels. Ordered Thyro Gold from New Zealand. It's comparable to what I paid for my pig thyroid, and it's bovine. I'm on day 9, and my temp is up, energy levels are back, etc. I paid $80 US for a 100 pill bottle at 300 mg. I think it's going to prove too high a dose. I also get labs done, again on my nickel, because my practitioner is backed up. I normally would not advocate for this, but with thyroid, the medical profession seems to be in the dark ages. You literally have to be your own doc, it feels like. Big pharma here got total control of the natural desiccated thyroid that helped so many people feel better in order to drive them onto synthetics. If I couldn't source NDT from New Zealand, I don't know what I'd do. Spain just introduced a new porcine thyroid medication, and I'd love to get it, but it's not being imported here just yet. You might have better luck. If you can afford to pay out of pocket, order your own labs, and source medications that work. The USA doesn't regulate things like Thyro Gold (yet), and labels them as 'supplements.' That enables me to buy it without prescription. I am sorry for the hell you're going through. It's criminal the way docs treat thyroid, honestly.
Totally agree with the content of your post and I too am going my own way and self medicating - just curious as to the details of the Spanish NDT if you wouldn't mind sharing details ?
You will have to answer me via a Private Message - PM - just press on my icon alongside this post which takes you to my profile page and the facility to PM - the icon ' chat ' that looks like a paper plane above - lights up my end when I have a message :
Thank you :
Strongerme23 'Spain just introduced a new porcine thyroid medication, and I'd love to get it, but it's not being imported here just yet. '
Do you have more information about this product please?
Where did you hear about it?
Is it a prescription only medication?
An over the counter (OTC) supplement?
What is it called and who makes it?
Spain has one of the very best public/government websites for medicines.
You can search for anything. There is even an option to view in English. (Though it is not always clear whether search terms need to be in Spanish or English!)
I tried numerous terms based on tiroides disecada/desecada and/or desiccated thyroid. Couldn't find anything that could be a new porcine desiccated thyroid product.
However, that is not proof such a product doesn't exist. It could be for export only, or under a specific name I didn't think to try, or as a supplement that doesn't need to be on that medicines website, etc., a special made to order, etc.
General searches were no more helpful in finding out anything about a new product.
Any more information would be appreciated.
Strongerme23
it’s Bioiberica. It looks like they’re a wholesale manufacturer, not doing any retail. I’m going to write to them to beg them to consider it as the US FDA just banned NDT so you can only get it as a ‘supplement’ (not regulated by FDA) and overseas. bioiberica.com/en/products/...
Yeah Spain has the 7th best healthcare system in the world per WHO. US is #27 😳
Bioiberica have been mentioned several times here.
We have never established who buys their desiccated thyroid product!
Biofac (Denmark) also produce a desiccated thyroid powder ingredient:
biofac.dk/products/hypothyr...
Same issue - no idea where it goes.
Strongerme23, 'not doing any retail. I’m going to write to them to beg them to consider it'
Don't hold your breath (as the saying goes). Making the raw powder is one thing, making it into stable medications to be prescribed to patients (i.e. pills, capsules, whatever) is something else!. That would no doubt require huge investment not only for production, but for testing trials etc. Such things take years to come to fruition too, if they ever do. It's no trivial matter, which is probably why RLC finally pulled out of the NDT market.
PLEASE DO NOT SPREAD RUMORS! The FDA did NOT ban NDT
The FDA has advised against compounded versions. a4pc.org/2022-09/fda-uses-b...
The FDA is anti compounding of any drug in any form so this is just the latest. The classification as a "biologic" is problematic, but if it really goes to the mat, the manufacturers of Armour and NP-Thyroid do have the capability. Plus citizen groups have fought the FDA before and won. So something to remain aware but not stress over quite yet.
Patti in AZ
I think it's way more problematic than that. The only NDT maker left unmolested by the FDA is Allergan, bought by AbbVie, who makes Armour. Many Armour consumers said the formula changed after Allergan bought it, and was far less effective.
Nature-throid and WP Thyroid, which worked for so many, are now completely off the market. You can't find them. I was having mine compounded, using USP Thyroid, the main ingredient in Nature-throid, but that's become unavailable too.
AbbVie has $30 billion in annual sales, and manufactures Synthroid, synthetic T4 that many people, like me, cannot use. It's the most prescribed Thyroid drug in the US. Both Synthroid and Armour are the most expensive treatments in their class. Naturethroid used to cost $8 a bottle of 30 tablets. Synthroid is $40+.
You don't see any relationship between the FDA making a surprise announcement to apply a new “biologics” designation to a safe and effective 100-year old drug that does not fit the definition of a biologic, putting RLC (maker of Nature-throid) effectively out of business?
I've had no problem getting NP-Thyroid.
In case anyone is interested, I found this reply by Bioiberica to someone who contacted them:
Unfortunately we only sell our NDT to companies located in Germany, Netherlands and Denmark.
We would like to be of help but we are not aware of any pharmacy in Portugal or Spain who is currently selling our NDT compound.
Hi Strongerme23 thank you so much for posting this information. I have just asked for downloading of the information on this product. At the moment all NDT products do not suit me because of some of the excipients (mainly Acacia Powder and Cellulose).
• in reply toStrongerme23
Thank you for your story and understanding. You seem to have been doing a lot of proactive research. I hope things change for you.
after 4 years, I think I’d start taking matters into my own hands. Get bloods tested privately via Medichecks or Monitor my health etc. Get at least tsh t4 and t3 but also folate b12 iron etc if you can afford it. Once you have the full picture post results here. It could be you need to take liothyronine along with your levothyroxine or that one of your vitamins is low so is stopping you convert the levothyroxine properly. Basically you sound under medicated - I think you know that as you know the coldness is a symptom.
Hi BWIL . just to add something that hasn't been mentioned by anyone yet . i've had several smallish dose adjustments up and down in the last 3 yrs, ( post-menopause seems to mean i now need a bit less after being stable for many yrs previously)
When reducing Levo dose i have found that my initial reaction for the first 2/3/4 weeks can feel as though it's definitely been reduced by too much and i've felt horrible (cold / mentally & physically slow / constipated etc ) ...... however from week 4/5 onwards i begin to gradually feel more ok again . This has happened twice.... (another time it wasn't improving and i continued to feel undermedicated and still getting worse after 5 weeks ) .
I now realise that in the past i had made up my mind up far too soon about how a new dose will feel, and previously i have insisted i go back up to previous dose after only trying it for 2/3 weeks .
So .... while you definitely do need to get your actual results so we can see whether these dose changes were appropriate , do bear it in mind that 2 weeks is too soon to know how a new dose will really feel once your body has had time to adjust to it .
If i'd been asked at week 2/3/4 i would have been absolutely adamant that the dose i'm now on was too low and would have insisted on putting it back up ... however , it has actually proved to be a very good dose for me, and over the following year , how i felt kept improving gradually all the time.. so i'm vey glad i stuck it out for 6 weeks to see if things started to improve . So my new rule for myself is to largely ignore how a new dose feels for the first 5 weeks , just make a note of it each week.... and start to pay attention from week 5 onwards.. if some things are improving by that point , or if i'm not really sure, then i wait a bit longer and test at 8/12 weeks ..... but if things are still really horrible / getting worse after 5 weeks than i test at 6 weeks and re-asses that dose .
Some reasons why doctors often get it wrong:
1) Have they been adjusting too soon ..... they need to allow long enough for your TSH to respond before changing dose again... it can sometimes be very slow and can lag behind how you actually feel by many weeks, even many months., especially if it's been very low.
eg. how long were you taking 100/75 for , before it was reduced again to 75 ?
2) Have they been adjusting by too much ....the drop from 125 to 100/75 was a pretty large reduction ... it's usually best to adjust thyroid hormone by smaller amounts than this ... often a subtle 12.5mcg adjustment is all that was really needed.
Some Doctors do seem very heavy handed / trigger happy and start jumping the dose all over the place in response to the TSH because they don't seen to understand quite how long it can take the body and the TSH to adjust to a new dose .
• in reply totattybogle
Now that all makes sense. I would be post menopausal and had forgotten about the 100/125 dosage. My body is exhausted trying to keep me warm and even though I add extra layers it takes a few hours to warm up. As you suggest, I shall wait a few more weeks and hopefully will feel differently. Thank you.
Sometimes it's a small comfort to know that you are not alone with some of the weird symptoms we get with this horrible condition. I also am cold - no matter how many layers of clothes I wear - my nose in particular becomes icy, particularly when resting in the evenings. I put a hot wheat bag around my throat which warms things up. Just a practical tip which I hope will be a small help.
• in reply toFlynzer
That's a great idea because the top of my back would also feel cold. Thank you.
About 6 weeks ago I noticed (and I have sooooo much going with my health that it was pretty bad to make me notice) I was absolutely freezing. It wasn't even that cold and I was shivering.
So I ordered a private testing kit and sent off bloods fully expecting it to tell me that my T3 and/or T4 was dreadfully low.
Well when the results came back, they came with an emergency note saying I must see my GP immediately, as my thyroid levels showed I had overt hyperthyroidism! Pretty impossible for someone whose been hypothyroid for decades.
But unbelievably both my T4 and T3 were way above the upper part of the range, with my T4 outstripping my T3 which is strange as I was on NDT and usually T4 is lower, plus I was only taking 2 1/2 grains and ideally I need more, but I'm broke at the mo.
Really odd. Now I had had a throat infection a few weeks before and my allergies were on the rampage and I could only conclude that this was responsible for the sudden wacking high results.
But I was absolutely freezing and everything I ever read said I should be burning up with heat and having tremors with numbers that high.
I guess I'm saying to understand what's going on you do need occasional private testing. I usually dose myself by symptoms, but if I had done that this time I potentially would have made it worse.
I'm sorry but the NHS isn't up to scratch when it comes to thyroid disorders. I can tell you I could be suffering tremendously and my GP would still reduce my levo to nothing on the basis of a one-off test result showing TSH only. It's been done to me. I've even had it stopped completely without so much as a phone call or a text message. I ask myself would they do that to a diabetic? No.
You have to take control of your own health while it's still possible.
Im curious to know what your labs were for free t3 and free t4 with the ranges???? My free t3 was slightly above and the free t4 was on the higher end and I have been freezing. That said, it could be my iron levels causing this since I havent testee for a while.
Free T4 = 27 (12-22pmol/L)Free T3 = 11.3 (3.1 - 6.8)
I simply couldn't believe it considering how cold I felt.
Wow, that's high. I wonder if it was going into reverse t3 and therefore not getting into the cells and giving you enough of what you needed. Thnxs for sharing.
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