Recently raised Levothyroxine to 75mcg per day, from 50mcg. Still tired, canāt exercise. Only keep my job as I work from home, which is going to change soon and I need help. Been like this since 2014 and always told tests normal NFA. Paid for my own tests and found T4 low. Finally after years of trying, got 50mcg per day. Felt better but not much. Canāt go into work for full days. Canāt exercise, even 30 min walk a day is exhausting. Few months ago got put up to 75mcg per day. Felt a bit better. Joined a gym, workout using lowest weights possible, took a week to recover, bone pain all over. Always did weights before this in 2014. Have read dose should be by weight so should be 1.6mcgX95kg=152mcg per day. If bloods are normal and I still cannot function, what do I do? I canāt afford not to work. Want to lose weight and exercise. Mental health issues, extreme fatigue, canāt do anything.. Docs wonāt help and I donāt know what else could be at playš„ŗš„ŗ
no helpš„ŗ: Recently raised Levothyroxine to 75mcg... - Thyroid UK
no helpš„ŗ
Biscuit to help we need to see those results and their ranges.Normal shoe sizes are 3 through to 8. Would you wear a normal size 4 shoe if your feet were a normal size 7? No, it would be crippling!
Well it's the same for thyroid hormones. Your blood results for thyroid come with normal ranges. For example the thyroid hormone ft4 can have a normal range of 10 to 22. Like the shoes if you're result is a normal 14 but your body needs a normal 19 to be well then you will have problems.
Ask the surgery for results and let's see what is what.
apologies, I didnāt thinkš¤¦āāļø. Last one was this which is why they wonāt give me anymore but I am still in a really bad state.
Serum TSH level 1.99 mIU/L [0.27 - 4.2]; As of 7/12/21, note new TSH ref. range.
Serum free T4 level 14.7 pmol/L [12.0 - 22.0]; As of 7/12/21, due to a method change, FT4
results are on average 20% higher.
Youāre right to believe you need a dose increase. Most people treated with levothyroxine for hypothyroidism feel better with a TSH below 1.0 and their FT4 in the top part of the range.
Thereās lots of wriggle room there for an increase in dosageāyour doctor is being unnecessarily cautious. Iād go back and ask to trial 100mg. Levothyroxine is cheap as chips (probably cheaper in the currently climate) and you arenāt currently anywhere near at risk of being over-medicated.
Iām not sure there is any point, they donāt monitor anything out check anything other than the blood test results and say all is normal, off you goš„ŗ. I might try one more time although the last conversation was somewhat uncomfortableā¦ to say the leastā¦. Thanks though, nice to know someone agrees š
These results are 2 years old? Even when they are being really useless they test annually?
Go request a new test (following the guidelines we use, fasted only water, pre 9am draw no levo for 24hours) also ask them to test Folate, B12, Ferritin and Vit D comeback with your results š¤
These go tests or ones you said youād paid for? Paid for ones would include T3 And May have slightly different parameters to nhs ones?
When I was first prescribed levothyroxine (T4) I developed severe palpitations, especially overnight. The Cardiologist at the nearest hospital had to monitor these whatever time - even during the niight.
There was no solution or advice.
I was fortunate that when I was prescribed T3 I've not had any palpitations since and my body feels 'normal' and I feel well.
glad you got sorted. Iām just knackered no matter whatš¤¦āāļø
I knew a hypothyroid librarian, in her late 20s, with a public-facing, generally seated role, who had to have a sleep each lunchtime. Before treatment started for me in 2014, waking up in the morning was a problem, progressing to randomly occurring coma-like sleeps which I'd repeatedly try to rouse myself from. When treatment started and my TSH had dropped to 4.4 my GP considered it "job done". There was a student observer, and I made a fuss, so was allowed further dose increases. Although daytime dropping off was a bit less of a problem, I was having to have an hour's sleep in the late afternoon. Incorrectly prescribed treatments for hypertension were also part of the picture, and I'd read that sleep apnoea can contribute to ongoing symptoms. It got scary when I was started on a beta blocker during a hospital stay, which triggered central sleep apnoea. I now realise I've had obstructive sleep apnoea, due to my nostrils, since my twenties, when I was very active and told I looked underweight. All along, lurking in the background, was my history of inadequately treated Lyme disease, and COVID-19 will, by now, be a factor for many of us. In my case, it's been difficult to acknowledge and accept these. Some think COVID-19 leaves people with a devil-may-care attitude to the ongoing risks. Thyrotoxicosis was one of the problems for me, and the NHS seems only to be getting back on track this year, after the vacutainer shortage and the directive to cut testing frequency. This year I've reduced my dose, not too willingly when my new GP got involved, but my TSH took a few months to respond. When it did respond, it had risen to 4.8 and was signed off as OK by another doctor. So that's two personal experiences, almost a decade apart, of just in range TSH being considered acceptable, so I'm concerned for other patients in my area. My waking from a coma symptom had returned so I increased my dose by 25mcg and had a long wait for an appointment. Another trainee GP, to whom I mentioned that GPnotebook suggests TSH below 2, and other sources say it should be 1 or below, but she didn't seem to know what increased TSH corresponds to. I've had several hyperthyroid phases through my life, and recent experience of over- and under-treatment. I cannot honestly say that any period during my treatment has been without noticeable issues, which have sometimes been worse than before treatment. This year I've been living on savings which, mentally, is like feeling trapped in a bath of cooling water (a reversal of the "boiling frog" syndrome), which I've experienced in the past. I fear executive dysfunction will get the better of me over the coming years and I won't have the gumption left to sell possessions to survive.
Apologies for the lack of paragraphs. What I've tried to say is that other factors may contribute to your symptoms, with COVID-19, for most us, by now part of our medical histories and futures. Over-treatment, self-treatment, overuse of some supplements, over-exercising and unnecessarily restrictive diets can all cause problems. As can weight: mine always goes up after having an infection. I doubt the halcyon days of perfect treatment with desiccated thyroid extract ever existed. That's it, for this gloomy morning. Best wishes.
You're in same position as me. Trying to do whatever we can to feel better. Everything except confronting the doctors who say they cannot help . Need to start pushing the doctors to increase dose to the one that makes you feel better. I'm the same . I have been to soft and assuming the doctor knows enough but they don't.
Youāre so right Keith theyāve been telling me for years am ok when clearly I wasnāt I thought it was me!! Since Iāve taken up my own reins and joined here Iāve learned so much. We give too much power to GPS they need to be asked to listen to their patients!
If you can, try a different GP from the same practice. You donāt have to see the one youāre registered under, you can make an appointment with any of them. The first dr I saw wouldnāt increase my dose, so I tried another and she would. Good luck.
it would be beneficial to also check your T3. It could be low from poor conversion from T4. I find that with low T3 my energy level is very poor.
For me that would be far too little Levo - I need my T4 to be 19/20. When itās up there my TSH is then very low (<0.05). My GP has agreed to this as otherwise Iām very symptomatic and unable to function.
Please also ask to be checked for anaemia (low haemoglobin), and for low Ferritin (you can be Ferritin deficient without anaemia). Itās often linked to 1. Being female and 2. Having autoimmune disease.
I second trying a different GP, you should not be getting fobbed off when you feel this bad.
please pm me if you want to know of a reasonably priced pharmacy that will supply on-line. I was in similar position, knew I needed increase and GP refused, so I took action myself! Increased from 75 mcg to 100 mcg every other day. Feel so much better
Hi Libuse
After reading your reply to Biscuit, I'm wondering if you would share with me the name of your supplier of T4.
I source my own T3 and some of my T4 but I'd like to know of alternatives of T4 for future reference.
Thank you in advance š
Oh Iām sorry, think you have misunderstood me. I only take Levothyroxine. Unless that is what you are referring to??
Hi Libuse
Yes I mean levothyroxine
Do you have a private supplier.
Sorry for confusion š
I will message you now
sorry to hear you feel so unheard!
Write a letter ! put it in black & white - simple bullet points symptoms and quote NHS guidelines re weight v dose- request trial of higher dose with monitoring re guidelines! Good luck š¤š»
Hello Biscuit :
' If the bloods are normal ' - well clearly they are not normal for you - as you can't function and likely your dose of Levothyroxine is not working well for you.
We need to see at least - a TSH + a Free T3 and a Free T4 blood test result and range :
T4 - Levothyroxine - in itself is a prohormone - and needs to be converted by your body into T3 the active hormone that runs all your bodily functions - from your physicality through to your mental, emotional, psychological and spiritual well being - your inner central heating system and your metabolism -
and some people simple can't convert T4 into T3 and need a different treatment option -
You abilty to convert T4 into T3 can be down regulated by certain co-factors such as :-
thyroid antibodies, inflammation, and non optimal levels of ferritin, folate, B12 and vitamin D results and ranges - so ideally we need to see these blood tests as well -
and together with the TSH Free T3 and Free T4 packaged as a Thyroid Advanced Blood Test - a venous blood draw and around 10 blood test results and ranges.
If your doctor is unable to help you there are Private companies on the Thyroid uk website and this is generally the route we are all forced to go down before we can get the necessary information and start to get our lives back on track.
Once with the results and ranges we can explain what it all means and help you better understand what is going on and offer considered opinion on your next best steps back to better thyroid health.
You sound more like a broken biscuit - and struggling in so many ways which is typical of hypothyroidism and running on empty with too low a level of T3 and T4 circulating in you blood stream -
and when hypothyroid - dieting and exercise simply exacerbate your symptoms further and down regulate your T4 to T3 conversion further - it is a vicious circle -
so be kind yourself and stop expecting too much too soon - you can come back from this but we first need some blood test results to help you properly - rather than guess at what might be the problem.
Once optimally medicated and with strong core strength vitamins and minerals you will be better able to cope -
Biscuit51 Your first step should be to get the right blood tests, share them here, then you will get the best advice for your situation.
Test private if you are worried, but you are delaying getting better and obscuring root causes by not knowing your full Thyroid results.
Did you mean this for me ?
Yes, but moreso to highlight that your post was the only one pointing out the specific blood tests, with very good explanations too!, that are so important for the OP to get.
I should have pointed that out when I started my reply!
Ok then :
i was in the same position as you are now, with severe symptoms, an ignorant GP and huge work and family pressures - it was hell for about 4 years and more.
Seeing an Endocrinologist privately was the only way I found to get help. I was lucky in that I only had to pay consulting fees, which were reasonable; all tests and prescriptions were NHS.
At my first visit he listened to my symptoms, looked at my blood results, and I eventually doubled my levo after time.
GPs never argued about dose after that .
Itās maybe not how it should be but my experience suggests you are wasting your time with your GP. Research Endos in your area - then get a referral on the basis of your symptoms. You could try asking for an NHS referral in the first instance before going private.
Ignore GP if the say āI donāt see what a consultant can doāā¦.as was said to me. Make list of your symptoms and effect on your quality of life and risk to your job ā¦ā¦and donāt take no for an answer.
Wishing you the best of luck
You will have to get used to difficult conversations with GPs. My take, which seemed to work well, went like this "I understand what I am asking is a bit difficult for you because medical research hasn't caught up with patient experience yet but I think I need....... if it doesn't work I can always stop it but I'm hoping you will agree to work with me on this to try to improve things because I am definitely not feeling right at the moment." Ie empathy and partnership after all GPS given their rudimentary training on this are in quite a difficult position.
wow, what a lovely thing to wake up to. Thank you so much for all your posts and I do hope you all get sortedā„ļø. I am going to ask for 100mcg. Failing that it will be a complaint and a move of surgery. There are only two GPs at our place, the rest are temp. Their favourite is NFA! No matter there is still a problem!!!
Yes those results are old but they donāt monitor me and Iām terrified if I have a blood test, they will take away what I already have.
Much love to you allā„ļøā„ļø
Go Girl! They are letting you down bigtime... go tell them what they should be doing for you š¤
I would explain how you feel is putting your job at risk and you could be facing unemployment on medical grounds. No GP would want to be responsible for that. Its ridiculous, Levo is extremely cheap for the NHS, yet they treat it like its some rare and precious resource.
Its mass produced T4, not hand rolled on the thighs of dusky maidens in some far flung remote archipelogo š .
So you have several choicesā¦..seeing different GPs until one will listenā¦ā¦choice between sweet talking the GP and writing a letter of complaint to be put on your file. Using NICE guidelines or just playing ignorant.
If youāre going to talk it out how about trying a role play with a friend so you can practice what youāre going to say?
Biscuit51
Welcome to the board! It looks like you are new, and you are definitely in the right place.
Iām so happy you got so many responses! So I will just add a couple things that have helped me:
1) You need the right blood tests. If you canāt get them from the NHS, get them privately. Canāt stress this enough. FREE T4, FREE T3, TSH at a minimum. Antibodies at least once. A small list of vitamins too to fully get better. Search the board and you will see posts with the list, and testing protocols. pennyannie ās post above is a great place to start.
2) We thyroid folks are all the same, and also very very different. None of us are doctors, even though the advice can be better and more helpful than any doctor you will ever see. Until the overwhelming confusion of why you feel so ill clears up for you, until you understand the tried & true basics of how us Hypothyroid people work on getting betterā¦ when in doubt, rely on Admin posts. I rarely see āwrongā or āfalseā posts but through the eyes of a new patient, some advice might be misunderstood.
3) PATIENCE PATIENCE PATIENCE. Thyroid hormones in your body are like a cauldron of chain reactions. Changes take weeks and months to settle. A minimum of 6-8 weeks is recommended to wait after any dosing change. You can overdo it and not know for weeks, then spend months course correcting. Change one thing at a time, and go slow. Increase in small doses and give it time. Patience is so hard when feeling bad. There is no quick fix but there is a fix!
There is a short list of likely suspects to get you better - from various forms of levo and thyroid hormones, to vitamins, to diet intolerances. Once you get a grip on it all, itās not as confusing or overwhelming.
Lastly - come back and post often! Start new posts for new questions. Fill out your profile with your story and your blood test results history and how you feel. Good luck and glad you found us!
How did you get on? š¤
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