I hope that your all doing well with your health? Can I please get some help with my recent blood result, as I'm feeling rally unwell and struggling to maintain m thyroid health. I haven't felt well in a long time (I know many people are in the same boat), but I'm experiencing water retention in legs, arms face and stomach and its getting worse. i feel that my voice has changed and struggling with symptoms like getting out of breath whilst talking and walking a few yards. i also, out the blue have left thigh/groin pain that radiates in different areas of the thigh and can be very painful, especially if gets you by surprise. I enclose my thyroid results below from the 22/04/21 and would appreciate any help and advice. GP would like me cut down on my 125 mcg levo, but he doesn't know that i take 2 grains of WP thyroid or Armour thyroid, I am very symptomatic at the moment and unsure what to do.
Many Thanks to you all.
UK Reference range: IN BRACKETS
TSH 0.01 miu/l (0.27 - 4.2 mU/L )
serum t3 6.4 pmol/l (3.1 - 6.8 pmol/L )
serum free t4 28.5 pmol/l (12 - 22 pmol/L )
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Poonam1
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125mcg Levo + 2 grains of NDT is quite a lot of thyroid hormone replacement. We really need the ranges (numbers in brackets) for members to be able to provide informed comments.
Ranges vary with different labs so unless the test was conducted by the 'British Thyroid' these ranges may not be correct. Whomever requested/conducted the test should be able to retrieve & provide the correct lab ranges. Ask for a typed printout of your results and not have them verbalised or scribbled down which risks omitting important info, as without the ranges they are not useful.
Poonam1, I just want to say that you really must tell your GP what you are taking. It's important that it appears on your medical records. If you have an accident or go into hospital they need to know. If you've been knocked out you won't be able to tell A&E that your medical records are incomplete and you might get the wrong treatment.
Your GP is trying to adjust your dose without knowing what you are taking - that isn't easy for him. It's a bit like doing a jigsaw with several pieces missing. Is there anything else you are taking which you haven't told him or us about? Do you take supplements and have you been tested so that you only take what you need?
My late husband had the idea that he only told his doctor what he wanted to tell him. We were on a cruise when he had to see the ship's doctor. I can still remember sitting opposite him in the doctor's surgery, with him trying to wink at me to stop me mentioning something. My view is that I tell the doc as much as I can think of and the doctor decides what information is relevant.
Dear Anthea I understand your frustration of being untruthful to GP's and i dont advocate that but, this is action that has occurred due the unsympathetic nature and attitude of my GP . They abide by set regulations and people that are experiencing symptoms of hypo or hashi's are told to get used to your symptoms because there's nothing that can be done. I understand the severity of not being absolutely clear with your GP and with out being disrespectful, I'm sure there are other people on this site that have experienced and are experiencing neglect due to their GP's not being thyroid educated or trying to keep costs down. I have confided in my care provider before only to have it all taken away and feeling like the undead for almost 15 years, so I've tried all avenues and gotten no where. The suffering will know what its like!!. Sorry if I've offended.
I was also going to ask if any one can suggest a functional Dr in Birmingham or if anyone knows if Dr Skinners work has been taken over?
Hello Poonam. I am sorry to hear of how poorly you are feeling.
Its a hard one not telling your GP what dose you really are on. Even though I had to also self fund my ndt thyroid meds for several years I always told them what dose I was on. That was really important - especially as Ive aged and needed medicine/treatment for other conditions or when I was diagnosed with a life threatening condition. So I know its hard to tell them but I would always keep a GP fully informed so your nedical records are up to date. Unfortunately you are right they probably will stop your levothyroxine. Given the state of thyroid treatment in the uk, in in all likelhood you wont be the only one in the practise who is self funding their treatment.
How long have you been taking the ndt on top of the Levothyroxine. Some people do need to add levothyroxine to their ndt but usually people start with levothyroxine then if that doesnt work add T3 in and if that deosnt work move across to ndt. And finally if the ndt isnt quite right add a little levothyroxine. It tales a lnog time to find the right balance as each dose alteration has to be left for 6-8 weeks to allow the body to adjust and then be retested.
However Base on the ranges you have provided it looks like you are over medicated. (You could ring the labs at your current hospital to enquire after the ranges but your doctors surgery should be able to tell you -They do vary from area to area)
The levothyroxine appears to be knocking the balance of thyroid horomones out. Have you tried ndt on its own or have you simply been topping up the dose of levo with ndt?
You should always keep your thyroid hormones in range (ft4 & ft3) as you can cause harm to yourself by being too high if left for a long period of time
Your Ft4 is way over range. So cutting the Levothyroxine is probably a good idea. In half seems drastic. When my levels went too high I stopped taking thyroid meds for a few days to allow my levels to drop and then restarted in at a lower dose.
I am not a doctor so this is just my experience.
I would also check your B12, iron, folate and vit D levels. They are commonly low in hypothyroidism and correcting these can male a big difference.
The swelling you describe is unusual in someone with the high levels of thyroid hormones you have posted. And it does need investigating. So in your position I would level with your GP apologise and start again. You may need further investigation.
'The swelling you describe is unusual in someone with the high levels of thyroid hormones you have posted'.
Swelling (water retention) is a common hypo system that can happen with any TFT level of thyroid hormone because that level is only representative of what is circulating in the blood.
When being treated for hypothyroidism due to the way deiodinases work, high levels of freely circulating thyroid hormone are more likely to result in hypothyroidism on a cellular level through causes such as receptor resistance, dominant D3 enzyme behaviour converting excess RT3 or elevating binding proteins leaving too little unbound for use.
Also once excess binding proteins become involved we risk elevated sex hormones so can maybe couple in the bloating & water retention effects from excess oestrogen.
Yes thats true but the balance of thyroid hormones being taken of t4 to t3 ratio is very high which will not help matters unless it has been done as a gradual and calculated need. Therefore a short period of stopping and then lowering the meds should help to address this unless of course only T3 can be utilised. I certainly did not experience swelling or increasing swelling with high levels of thyroid hormones.......and as layperson I can only really go on my long personal experience of dealing with my own hypothyroidism.
Unfortunately as far as Im aware there is sadly no standard test out there that can check uptake in the cells and the utilsation of the thyroid hormones that you describe- as of yet. Wish that there were! So it doesnt really help with practically moving things forward does it? This is why there has to a be a slow and methodical changes in doses/types of thyroid hormones and optimising of vits and minerals to effectively slowly try out the different combinations and dosage levels to find the best fit. You cant really jump the gun frustrating though it is. Unless you have a suggestion to how Poonam can move things on that doesnt require this slow methodical protocol?
I am not a medic but the swelling with high level of thyroid hormones to me is unusual and outside my own personal experience so I felt it would be wise to check in with a medic. Finding that experienced and knowledgeable medic is a real problem though in the uk......hence the activity on this forum and why so many are having to try to self address. So a conundrum! But you sound like you have that knowledge to advise Poonam. 😀😃
Only with my own experiences & from what I read from hopefully credible sources.
And exactly why O/P hasn't told her GP as she explained she has been badly let down before. Totally agree she is likely overmedicated so needs to reduce meds, whether gradually or miss out a few days depending on levels. Those TFT ranges may not be correct so have asked O/P to clarify.
Im aware she has been let down Radd but that still doesnt make it right not to keep your medical tecords current. What happens if she is involved in an accident or has some ilness that she becomes unconscious and ends up in hospital or becomes unable to manage her meds due to illness? ........she will be treated per whats on her medical records. I self treated for several years but told my GP what I was doing because they eould only offer me standard levothyroxine which didn't work for me. Im glad I did that for two reasons - one in the end I moved practises to a GP who would nhs prescribe ndt with backing of nhs endo as Id been stable for a long time, two I was diagnosed with cancer but having been stable on self funded ndt for several years that was evident on my medical records with blood tests dating back it wasnt queried and my treatment took account of the meds I was self funding. Thankfully I remain in remission.
I have not said it is right to withhold info from a GP! 🙄
Although O/P hasn't asked, both you & another member have made clear your views that you don’t agree with her practice, whereas I prefer not to state my opinion.
That true and neither have I said you have. 🙄 We are all entitled to decide which of our opinions to express. If you choose not to then thats your decision and your right. Please allow the other poster and I to choose too. Thank you. Take care.
Looking through previous posts, can’t see any vitamin results
When were vitamin D, folate, ferritin and B12 last tested
What vitamin supplements are you currently taking
Do you have Hashimoto’s (high thyroid antibodies)
If you have Hashimoto’s are you on strictly gluten free diet
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12 at least annually
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
When on T3, or NDT day before test, split dose into three smaller doses roughly equal 8 hour intervals. Taking last dose T3 at roughly 8-12 hours before test
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
Why does no-one on here ever give a comstructive reply about what to do about fluid retention? I too asked on here couple months ago, asking if anyone knew of safe diuretic to take? Only way i can help it keep it little bit at bay is extreme calorie deficit and extreme exercising neither of which is good for thyroid!!And yes i do keep on top of my vitamins. I suspect stress of looking after an elderly parent & being post menopausal have big part to play in why i cannot rid myself of annoying flabby bits!
Are you on blood pressure medication? I have been for the past couple of years and have the impression fluid retention has worsened. I recently switched doctors and my new doctor (who also practises natural medicine) said I should have been switched to a blood pressure drug containing a diuretic when it was obvious the first drug I was put on failed to normalise my blood pressure.
I don’t want to scare you Poonam but if you are experiencing fluid retention and speedy weight gain, you need to get in touch with your GP as soon as possible it could be a heart problem, so don’t take any risks, you need to get checked.
Thank you all for you knowledgeable insight and want to apologise for anything that’s offended.. I will reluctantly update the gp from a medication and symptom point of view. I will also start a new thread to ask if any one can recommend a naturopath in Birmingham who would be willing to work with me.. Many thanks again ❤️
Hello Poonam. Bless you. I dont think you have offended anyone on here so please don't worry. Am glad you are going to take consultation. A functional doctor sounds a great idea. Take care and please keep us all posted. Im afraid I dont know anyone in Birmingham and I was under Dr Skinner who literally saved my life.......greatly missed may he rest in peace. Big hugs x
Hi Poonam, I can’t comment on your meds or what’s right for you in that regard, as I only take Levo, however revving up your body to run too high than it should to wouldn’t be good for you either, in fact can be quite dangerous. However, it’s quite possible the weight gain and water retention and the pain in your leg in particular may be nothing to do with your thyroid, but I would urge you to seek help from your gp immediately, as a set of symptoms these could be serious, a DVT for example could cause this, a heart problem could cause this. So you do need to get them checked out. Ps Is your breathing normal is your heart rate normal, are you sleeping ok?
I was on 200mcg of T4 levothyroxine and 20mcg of T3 liothyronine, and on that dose, which was great at first, slowly developed extremely high deiodinase 3 levels, this can show up in blood tests as a high rT3 because deiodinase 3 enzyme is what converts T4 into rT3 instead of T3, and it also converts T3 into T2. Basically my normal dose caused tissue level hypothyroidism resulting in weight gain and bad hypo symptoms whilst my blood tests showed subclinical hyperthyroidism. I'm now on 50mcg of T4 and 20 - 40 mcg T3 depending on symptoms.
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