It seems that the more I read, the more confused I get and the questions I have, so I am hoping someone here can 'uncoil' the confusion for me!
- Common sense (in my head) suggests that if you start taking Levo' (even if it is not yet at the right dosage), some of the symptoms will get slightly better. I am basing this on the understanding that taking non at all will have you feeling more and more poorly. Yet, on 75 mg and a TSH of 3.5, I am not feeling a difference. (Initial TSH back in June was 13. something.) On the contrary, I have developed a couple of new symptoms such as rigidity in my fingers/hands (they seem to get very stiff and lock up), and 'crashing' following consumption of sugar/carbs. Is it normal to develop or experience worsening symptoms until on the correct dose of Levo, or should I be asking my GP to explore, for example, insulin resistance? I am also a bit concerned on reading one post on here where a GP told a patient they might 'never feel better'...
I guess I want to know (warts and all) what to expect. I am having my next round of bloods next week (although I might postpone until the end of the month for private ones instead) and will then need to tackle another (related issue): work and informing occupational health of my Hasho's. This, I know, is going to mean trying to answer some uncomfortable questions such as: 'when do you think you will feel better?' (laughable, I know.) I have spoken to my union officer and he advised waiting until my next blood result before doing/saying anything, but a compromise agreement on medical grounds may have to be an option I will have to give serious thought to. I am getting married in March and still have 12,000 to find to pay for it so desperate not to lose my job.
Hope someone can help.
Thanks for reading.
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Blue_feather
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The aim of replacing thyroid hormone is to be symptom free and once on an optimal dose which is usually with a TSH of around 1 you should recover although it can take a few months once reaching an optimal dose to feel better.
However, sometimes patients have other conditions which accompany autoimmune thyroid disease which means they still don't feel better when reaching an optimal dose. This then needs investigating further. So, if you find you still don't feel well 6 to 8 weeks after reaching your optimal thyroid dose then you need to ask the doctor to investigate. Don't accept feeling unwell long term as in most cases this is not the case.
Until you've reached your optimal thyroid hormone dose it's difficult to determine whether symptoms are caused by thyroid disease or something else so it's probably going to be a process of elimination.
You need to ask your doctor to test vitamin D, B12, folate and ferritin in the meantime. It's common for these to be low in hypothyroid patients. When you get the results, make sure you get a print out that includes the laboratory ranges. Don't accept the doctors say so that they are 'normal' as you will not feel well if they are at the bottom of the NHS lab range. Post results here if you'd like help interpreting them. These vitamins all work together with thyroid hormone and if any are low, you will not have optimal function. You can check this out now, you don't have to wait until on optimal thyroid hormone dose.
If you have not already done so then ask the doctor to check for thyroid antibodies to find out whether it's autoimmune thyroid disease.
Autoimmune thyroid disease is progressive and slowly destoys the thyroid gland although it is successfully treated with thyroid hormone replacement. The disease progression can fluctuate so there may be times when you feel unwell and need a blood test to alter your thyroid hormone dose. Fortunately thyroid disease can be well managed with thyroid hormone replacement. The annoying thing about thyroid disease and thyroid hormone is that dose changes are very slow and improvement is slow too because it takes 6 to 8 weeks for thyroid hormone to circulate into all your cells. So increases and reductions in dose are very slow to normalise.
Hi Blue-feather, don’t do anything rash or irreversible as one problem with thyroid imbalance is that it temporarily clouds our judgement. 75mcg is a very small dose and very unlikely to resolve your symptoms. Sometimes thyroids fail in stages and as fast as you replace hormone your own production drops off and so there’s no improvement.
Both your TSH and how you feel show that you are undertreated. Thyroid hormones affect every cell in your body but different systems in our bodies react at different rates to increasing and decreasing hormone levels. This all makes for a very confusing situation where symptoms of long standing low thyroid can appear even after starting treatment.
I have read (somewhere, but can’t remember where) that we get our worse symptoms as we approach our individual set point then bingo we feel great when we reach the correct dose. It might be for instance that you feel perfect on 100mcg.
I am sorry that one GP has told a patient they might never feel better, but this tells us more about the skills of the GP than it does about Hashimotos or hypothyroidism. With the correct treatment for the patient (which does have to unfortunately be arrived at through trial and error) it is possible to feel healthy and well. For many of us who have been undiagnosed for long periods of time adequate treatment leads to the best years of our life and there is no reason the same cannot happen for you too.
Listen to your GP but you have a lifelong condition which needs the right treatment and if your present GP can’t rise to the challenge then you may have to get a better one. Wish you all the best for a happy and healthy life in the years to come once you get through this tricky patch.
Hi Blue_feather, It's hard to say what to expect, as we are all different. You asked, "it it is normal to experience worsening symptoms?" I don't think that's how it's meant to work and it could be a sign that synthetic T4 monotherapy (Levothyroxine) may not ultimately be the best solution for you. But you may have to stick with it a while to know that. I was in the same position as you. I felt progressively worse on increasing doses. Going from 50 to 75 mg was especially difficult. In fact, I twice dropped back down to get some relief. The theory Aurealis mentioned, that we may get worse before feeling better, is something I wondered about at the time, because it didn't make sense that I was giving my body the hormones it needed and I was feeling worse. I decided to persevere to see if the symptoms would resolve on an optimal dose or whether it was a problem with Levo. I had to increase gradually up to 75 mg and that allowed me to increase to 100 mg, where my labs were euthyroid. My GP was happy, but I certainly wasn't. It was then I could say I had given Levo a fair chance and it wasn't for me. I switched to NDT and some of those symptoms improved quite quickly. Looking back, I'm not sure I should have given it the full year it took, with my quality of life deteriorating.
By all means, look into other issues, such as blood sugar regulation. Everything endocrine is connected. I remember shortly after joining here reading a post that said untreated or undertreated hypothyroidism could eventually lead to diabetes, cardiovascular issues, etc. So I really tried to prioritse getting my thyroid hormone replacement sorted. Hypothyroidism is a full-body illness. I was surprised to learn how many symptoms it can lead to. thyroiduk.org.uk/tuk/about_... . Whilst you carry on sorting your thyroid hormone replacement, you could certainly try some lifestyle adjustments to see if they improve symptoms. Trialling low-carb eating could help with blood sugar issues. You could go gluten free and see if you feel better or antibodies decrease. You could try an elimination diet, i.e., cut out all gluten, dairy, refined sugar for 30 days and then re-introduce them one at a time to see if you react. There is lots of good information in Izabella Wentz's book, Hashimoto's Thyroiditis: Lifestyle Interventions for FInding and Treating the Root Cause. You'll also find great advice here -- you already have from the other replies to your post, and SlowDragon has given you several good resources.
If a doctor told a patient they may never feel better, shame on him or her. It can be empowering to take charge of our health and feel we're doing everything we can to feel well. Good luck as you continue to improve your health!
It would be a good idea to post your blood test results with the ranges on here for more answers. People usually do to obtain a better answers enabling to feel better.
OK, please don't beat yourself up over two pieces I sometimes eat three, it's good at the time and that's whats important. You are, however, right about the need for patience that is needed in vast quantities with all our ongoing problems.
A huge thanks for everyone's very thoughtful and comprehensive replies. I have a lot to digest (no pun intended) from your replies, and an urgent need to acquire a little more patience and less self-pity (I ate two huge slices of my own home-made Victoria sponge yesterday and it wiped me out for about 5 hours. Then I moaned about having wasted an entire afternoon sleeping.)
Strange, eating something, including something sweet, usually makes me feel better, though not sure about two pieces of cake!
I'm still on 50mcg Levothyroxine, (started at 25mcg in June) and feel very much due for an increase after just over 7 weeks. Blood test booked for Tuesday, but results usually take about a week, so still just over a week to go for hope of an increase
The pattern so far seems to be, feeling better after about a week, staying like that (though still some symptoms) then around the 5 week mark feeling slightly worse on some days, and then at least part of every day. I just hope they will give me another increase this time.
Perhaps our thyroids sometimes deteriorate at the same rate, or faster than, the increase in Levo? That might account for feeling worse instead of better. Like trying to run up a down escalator!
Most of us have long known about adding selenium to our diet. It aids thyroid hormone in reaching the cellular level where our health really begins. Recently I read about adding CO Q 10 to the selenium -that they work together. Vitamin D3 is also know as a hormone stabilizer. 2000 mg is considered a low dose. Fish oil is also a supplement that many of find indispensable in helping to calm inflammation - which can make us feel worse no matter what the blood levels read. Electrolyte balance, enzyme supplementation, and methylation considerations are all things we learn about here and again, contribute many positives that all add up to feeling better.
Let me add to the chorus of those urging something other than beating ourselves for slip ups. Still, if it is within your power remove as much sugar as possible - at least for a trial period of two to three weeks. Most notice a relief in all sorts of symptoms. Same with gluten free.
Many changes - and they cannot all be made at once. Highly recommend the book “Dirty Gene’s”. By Dr. Ben Lynch.
Please let us know what works for you. You will find good health and feeling better before you know it!
I would always suggest to someone starting out to start on Levo. We see a lot of posts in hear with people moving to takecT3 or NDT so yes that could be for you eventually. But we also see many posts that say Levo isn't working for me but resuktsoften can show it's because the dose isn't high enough or the writer isn't converting the T4, the inactive hormone (Levo) into the active,T3, properly. As you are starting out you don't know if you have any problems ahead of you but a very important issue is conversion or lack of it. You can only tell you have this from your resultsxif you are taking T4 only. Anything with T3 in it changes results and they are read differently so I think it important to check on conversion first. I can take several months to get on the dose that is right for you and most people do well on Levo so they don't post on here-too busy enjoying life! Post any results and the ranges and we can help you to understand them. The results are important as they differ from lab to lab.
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