Hello all. I have posted here before but not given my levels.
This is what I have
Free t4 14.5 range 10.3__22.7
Tsh 3.22 range 0.35___5.50
I have been back to gp to ask for a slight raise in levo, still within range but to try and counteract the terrible mind zapping tiredness I still have by the end of each day.
I have asked before, they have all said no and told me to have another blood test. Everything has come back normal.
Today the gp said that if I had just described what was wrong with me she would have referred me to a chronic fatigue clinic. She also said that a study 2 years ago has proven that people with hypothyroidism feel better with a more raised tsh. She absolutely refused to do anything more.
I asked to see an endocrinologist. She asked if I meant privately. I said no. So she said no. I asked if that meant i couldn't see anyone else and she said that i had to see yet another gp at the practice. I am going around in circles.
In a lot of ways its worse than before I was diagnosed. Then I was content to watch tv, eat and go back to bed. I didn't want anything, didn't need anything other than my dinner and an undemanding book and thought this is my life until I die. Now its like I've been given a glimpse of what life might be like and told I can only have it for 2 days a week. It so many ways it was easier before.
If some of you very knowledgeable people can have a look I would be grateful. I have no other thyroid specific tests, been told they are not needed. Likewise ferritin. If you all think that my gp is right I will go down the cfs route. They are all so convinced that my levels are in normal range so its not my thyroid thats a problem. As all my other tests are likewise fine it must be cfs. So very fed up.
Thanks all for reading.
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All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after.
Great film definitely shows why just testing TSH is inadequate
Always take Levo on empty stomach and then nothing apart from water for at least an hour after. Many take on waking, but it may be more convenient and possibly more effective taken at bedtime
Many people find Levothyroxine brands are not interchangeable. Once you find a brand that suits you, best to make sure to only get that one at each prescription.
You are undermedicated to have TSH 3.22 and need a dose increase, not referral to a CF clinic. It's total rubbish that people feel better with higher TSH. Either it's a trash piece of research or your GP is making it up.
The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 0.35 - 1.0 with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email louise.roberts@thyroiduk.org if you would like a copy of the Pulse article to show your GP.
Basically says that for older people that TSH shouldn't be below 4. (And the NHS definition of "elderly" depends on the doctor and what rubbish they want to spout)
Thankyou. I was so upset by the time I left I didnt ask what research she was talking about. I have had a quick look around Google but couldnt find anything. So thanks for this.
Does anyone know of any thing else? I am 57 and she is in her 30s, so probably sees me near enough to dead to not bother about.
I'm the same age as you. I gave up expecting the medical profession to treat my thyroid properly a while ago and now test and treat for myself. It means I no longer have to beg for help which is such a huge relief.
If GP was referring to that research there is a world of difference between the conclusion "Levothyroxine provided no apparent benefits in older persons with subclinical hypothyroidism" and the GP's interpretaton that "people feel better with a higher TSH".
I know. But GPs have been spinning their little knowledge of medical research to say what they want it to say, or just flat out lying when it suits them, for ever!
If it were me i'd see a different doctor either in the same practice or change practice, trouble is GP's are hellbent on numbers and because yours are all in range you must be well!! lol! Ive had this argument with many a GP and explained to them that id like an increase as i'd like to be optimally medicated not just in range which usually is accepted and i have been given the increase. Sadly a lot of undermedicated thyroid problems are similar to CFS and fibromyalgia symptoms. If you dont get any joy i'd go down the private testing like the others have suggested, i need to do the same, also i have hashimotos and have been low (but in range but at the bottom of it) in ferritin, VidD, B12 and folate, by supplementing these (only if needed) is supposed to aide conversion of levothyroxine FT4 - FT3 which is what is needed.
Ok. Crying now. I felt so small and ridiculous when she said I was wrong. I have asked at the surgery before and been toldno, have another blood test. She has said I have to see another gp and ask them. I dont know why because I have asked them before.
I will get theprivate tests done, but can I ask why they are needed and what they will tell me that I need to know?
I am assuming I have hashimotos because my mum, aunts and several cousins all have hypothyroidism. But I dont think any of us have been officially told thats whats wrong.
My folate, b12 and vit d are all " normal".
What else should I test for? And how much money (roughly) are we talking?
I have also just emailed thyroidgold. Feeling a bit desperate tbh.
Also dx with type 2 diabetes at the same time as hypothyroidism. Thats all now at " normal" levels, despite the diabetes nurse telling me that she would expect a t2d to have above normal levels for the future. Funnily enough gp did not even mention that!
Thanks again for just the comments. It helps to know I am not going mad.
Please don't cry. There are lots of helpful people on here. (Not much help I know, but with my TSH at 2 point-something I was wrapping in a blanket again. My GP thinks TSH 2 is just where it should be in the middle.) No, you're not going mad.
Sorry I'm not able to cover all you've asked - I'm having dizziness problems this week.
So instead, I'll just ask. Did you mean to reply to one of the above posters? I am afraid they won't necessarily see what you've written. To respond to anyone you need to use the reply 'button' directly under what they've written rather than the box at the bottom. However I will mention SlowDragon so she picks up.
Thanks. And yes, I did mean to reply to slow dragon, so thanks again.
I really do feel like I have been told that I am stupid. But on the other hand why should they do something which may be wrong? They are only paid to get us into normal numbers, not to make us feel better.
I am just going to have to do this by myself. The only problem is that I dont know how.
Most of us were fobbed off for years or decades with "results are normal"
Or the other favourite was "no one else has this trouble, they just take Levo and get completely better"
I was five years into disasterous treatment before a very nice endo said "actually we see 100's & 100's like you for whom this treatment just with Levo simply does not work"
At least she was honest.....needless to say she was moved on and never saw her again.
Hashimoto's it is extremely common to have very poor gut function due to inadequate dose replacement, leading to leaky gut and gluten intolerance and then very low vitamins
If your vitamin D, folate, ferritin or B12 are too low then the thyroid hormones can NOT work. They need to be optimal, not just in range
You do not need to have ANY gut symptoms to still be very sensitive to gluten.
Thank you. I was dx as diabetic type 2 at the same time as hypothyroidism and after a false start have now got that under control.
Because of the t2d I have been gluten free for about 8 weeks and now eat a paleo diet. My hba1c is now 39, a non diabetic range, down from 53. I feel.so much better about that. I have been looking into " leaky gut" (that sounds like a nasty hobby) and am hopefully now following a better diet.
My vit d is 78, way above normal range of 50.
Folate is 10.1, range up to 11.5
B12 678, range 211___910.
So all good I think.
May I ask, slowdragon, what you did when you were where I am now? So far my approach has been to dissolve into a puddle on the carpet. This is not getting me anywhere and I think I am very soon going to run out of patience with myself. Thanks again.
I didn't make progress until I took management into my own hands, after joining here and learning the importance of vitamin levels.
Getting private blood tests, done as early as possible in morning and fasting and no Levo in 24 hours prior to test (even my endo gave me that tip)
Even though your vitamin D is not low, it could be higher, around 100nmol may be better. Supplementing magnesium is often beneficial, very important mineral, often overlooked
Both vitamin D and magnesium must be at least four hours away from Levo
Magnesium is better in afternoon or evening.
I take Levo at bedtime, many find that an improvement (another tip from endo)
Brilliant that you are making progress on gluten free diet. Most of us seem to benefit, and if you get private tests these include antibodies testing so you can see if they reduce slowly
Read as much as possible about Hashimoto's and leaky gut
B12 - many of us find adding vitamin B complex and B12 helpful, even if results look ok
No ferritin result for you?
Lastly, if still struggling in few months time then perhaps consider getting DIO2 gene test, but it's only available privately
Thank you. No ferritin because I was told it was not needed.
I am going to order the tests. Thanks so much for your kindness and prompt replies. It means a lot to know that other people can feel like this even if the numbers look good and the gp seems toto think there is nothing wrong.
5) Receive results through email or via the company's website.
It is also possible to test with a full blood sample taken from a vein like the NHS would use. If you know someone who will take blood for you, then that would be fine. Alternatively you could pay someone to take it for you. You have to order the appropriate kit. Some tests cannot be done with a finger-prick sample.
Other tests that are very useful are tests of iron status. It isn't a good idea to start supplementing with iron without full info - ferritin on its own is not sufficient :
With a full set of results, as described above, people can tell you what you need to supplement, some reliable sites for buying, and the dose you need.
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With a full set of thyroid-related results we can tell you if you need more levo, or might benefit from switching to NDT, or whether or not you might benefit from adding T3 to your dose. It then gets more complicated because we have to buy prescription-only meds online, and that is always a risk. But it can be done.
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To learn how the whole thyroid system hangs together I would strongly recommend this book :
There are two editions of the book, and you should buy the newest one, which is what I've linked. Lots of people are selling the book second-hand and prices vary enormously, from a fiver up to one hopeful con-artist I saw a while ago selling it for over £40, so check prices carefully. It also comes in a Kindle edition, but I have no idea what that is like.
Thank you. I didnt really appreciate the use of private testing and will do loads of reading.!
I think a big problem.for me was deciding that I could find out all I needed toto know but still not be able to do anything about it. I am very happy to know that there is somewhere to go from here.
For example, you are legally entitled to get copies of anything in your GP notes - for a fee. If you've been in hospital you can buy notes from there too. If this interests you, then ask for links and advice on how to ask.
When testing there are good ways of doing it that maximise TSH and minimise Free T4. Since doctors rely on these a lot, it can make a difference getting conditions right, and timing right. It also helps to follow the same routine when testing because it makes it more valid to compare test results from one test to the next.
When the time comes for you doing testing, either privately or on the NHS, ask for advice on this.
Definitely get a copy of Dr Toft's Pulse Article from Louise. My doctor had been telling me my results were fine for years even though the TSH was way over the normal range. I finally showed her the Pulse Article and she has been really helpful, and my latest blood tests were really great. I still feel tired but my memory and concentration is much better and I just feel better all round.
My tsh level was 4.1 on a dose of 50mcg of Levothyroxine. After 8 months, I felt no different. I also asked at my medication review for a higher dose and was told to go away and live with it. When I attended for my blood tests, I left the medication off for 5 days and my tsh jumped from 4.1 to 16. A different GP has now increased the medication to 75mcg. Only been taking it for 5 days but if, before my next blood test, I feel no better, I will do the same thing again. Yes, it's trickery, but there was no other way. I also have a serious vitamin D deficiency, apparently. The reading was 25. Have been prescribed a two week intensive course. Maybe that will make a difference? Sometimes, the only way to make any progress is to resort to subterfuge!
Vitamin D is easy to buy on sites like Amazon and other websites, in a wide range of doses, and is also one of the cheaper supplements. I wouldn't bother trying to get a prescription, I just buy my own supplements.
Apart from anything else, doctors often prescribe far too low a dose to actually raise levels anyway.
Like the other mentioned, I would suggest you keep persisting with your GP for a referral to an endocrinologist.
I was also advised along the route of CFS. NICE guideline (recommended medical recommendations) reports that CFS should only be considered if all other medical conditions have been ruled out.
I'm sure there is a benefit to attending a CFS clinic, as the strategies to support your symptoms would be similar for your condition, however having a proper diagnosis, and the optimum doses are important in managing your long term condtion. I would not stop trying.
Might I suggest you send your GP an email and include the following:
1.A list of comparison of all your blood results- dated.
2. A list of at least a weeks worth of symptoms.
3. Summary of what you have tried i.e diet, fatigue management...anything really.
4. A list of at least 3 days of basal core temperature measurements- best taken first thing in am before doing anything.
5. Reason why this is impacting on your life and why you would like a second opinion before exploring CFS.
Either way, you will need this information if you do get to see an endocrinologist.
Do not be afraid to stick up with what you feel is needed! Good luck
I was also advised along the route of CFS. NICE guideline (recommended medical recommendations) reports that CFS should only be considered if all other medical conditions have been ruled out.
I'm sure there is a benefit to attending a CFS clinic, as the strategies to support your symptoms would be similar for your condition, however having a proper diagnosis, and the optimum doses are important in managing your long term condtion. I would not stop trying.
I would fight tooth and nail not to get a CFS diagnosis. Once that is on your records you will get every single symptom you suffer from blamed on the CFS, and it will NOT be investigated or treated. Since doctors believe that CFS means "it's all in your head" and "you could be well if you wanted to be" you will be treated with contempt by every doctor you see.
Sorry forgot to explain about Basal core temp. It is your body temperature reading. I found this web link that helped guide me through how to test this. It all helps to support your case that your condition and its management has not been otimised yet
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