Understanding blood levels

[Wendacox]

Hi had hypothyroidism for past 21 years remaied on a dose of 50 thyroxine with yearly blood tests.. Never feeling well just plodding on very unsympathetic gp told me just go to the gym that will help all symptoms.. Now have signs of being perimenipausal at 46 both hypothyroidism and perimenipausal show same symptoms so very hard to know which is which.. Anyway demanded a blood test again this week as so poorly.. My results are tsh 6.87 and ft4 13.6 told to increase to 75 thyroxine which never makes any difference.. Then repeat bloods in 6 months.. I want to see a specialist but have been told no.. I feel like I'm going mad and symptoms are dreadful I feel so ill everyday.. Help

[SeasideSusie Remembering]

Wenda

We need reference ranges for test results as the ranges vary from lab to lab. There's no saying whether your FT4 is low in range or mid range, it's very unlikely to be at the higher end. However, your TSH is almost certain to be over range so an increase was definitely needed and that will lower your TSH and increase your FT4.

What you also need is FT3 testing to see if you are converting T4 to T3 well enough, but that is rarely done even when requested by the GP as it's the lab that makes the decision, usually only done when TSH is suppressed (but not always).

You could also do with knowing if your hypothyroidism is caused by high thyroid antibodies being present, which would indicate autoimmune thyroiditis aka Hashimoto's.

Vitamins and minerals are very important too, all need to be optimal (not just in range) for thyroid hormone to work so ask for

Vit D

B12

Folate

Ferritin

**

Now you've had an increase in Levo, you need a retest in 6 weeks not 6 months. It takes 6 weeks for the full effects of a dose change so no point in waiting 6 months if you are still undermedicated on 75mcg. So arrange a repeat test for 6-8 weeks time, and if you're still not well with poor results then you'll need another increase of 25mcg, and retesting/increasing should continue every 6 weeks. The aim for a treated hypo patient generally is for TSH to be 1 or below or wherever it is needed for FT4 and FT3 to be in the upper part of their respective reference ranges.

When having thyroid tests always book the earliest appointment of the morning, fast overnight (water allowed) and leave off Levo for 24 hours. This gives the highest possible TSH which is needed when looking for an increase in dose or to avoid a reduction, it also means that you can compare results accurately. This is a patient to patient tip which we don't discuss with doctors or phlebotomists.

[Wendacox in reply to SeasideSusie]

Thank you for response I did test positive for antibodies when I asked if this makes a difference to treatment I was told no not at all.. Also refuse to test ft3.. I always have blood done early to fit in around work and I take my thyroxine before bed just to ensue my stomach is empty hoping it may be absorbed better

[SeasideSusie Remembering in reply to Wendacox]

Wenda

Positive antibodies confirm that you are positive for autoimmune thyroid disease aka Hashimoto's which is where antibodies attack the thyroid and gradually destroy it. The antibody attacks cause fluctuations in symptoms and test results.

When the antibodies attack, the dying cells dump a load of thyroid hormone into the blood, this can cause a swing from hypo to hyper-type symptoms and results, eventually things get back to normal and you can swing back to hypo again. Adjusting dose of meds can be helpful when this happens.

However, addressing the Hashi's by trying to reduce the antibodies is important and you can do this by by adopting a strict gluten free diet which has helped many members here. Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks. You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.

Supplementing with selenium l-selenomethionine 200mcg daily can also help reduce the antibodies, as can keeping TSH suppressed.

Most doctors attach little or no importance to antibodies and don't understand how Hashi's can affect the patient, sympoms and test results. Read, learn, understand and help yourself where Hashi's is concerned.

Gluten/thyroid connection: chriskresser.com/the-gluten...

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/h...

hypothyroidmom.com/hashimot...

thyroiduk.org.uk/tuk/about_...

As mentioned in your other thread, iodine is definite a no-no where Hashi's is concerned.

Hashi's and gut absorption problems tend to go hand in hand and can very often result in low nutrient levels or deficiencies. So getting those tests I mentioned above is very important, because this can be at the root of your problems. Unless nutrient levels are optimal, then thyroid hormone can't work. And any absorption problems need to be addressed so that nutrients levels can be improved.

Check out SlowDragon 's reply to this post for information and links to help with absorption problems healthunlocked.com/thyroidu...

Thyroid function test. ( mm1) abnormal..

You should ask for a print out, that doesn't make a lot of sense. Often receptionists haven't a clue about test results and ranges. That might be TSH but the measurement (mm) is incorrect and 1 wouldn't be abnormal anyway, it would be in range. Thyroid Function Test can include 3 tests - TSH, FT4 and FT3.

[Clutter]

Wendacox,

You've not been taking 75mcg so don't assume it won't make a difference. Your GP should retest thyroid function in 6-8 weeks, not 6 months, in case further adjustment is required.

The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 0.3 - 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 [e-mail] if you would like a copy of the Pulse article to show your GP.

Positive thyroid peroxidase antibodies means you have autoimmune thyroid disease (Hashimoto's). There is no cure for Hashimoto's which causes 90% of hypothyroidism. Levothyroxine treatment is for the low thyroid levels it causes. Many people have found that 100% gluten-free diet is helpful in reducing Hashi flares, symptoms and eventually antibodies.

chriskresser.com/the-gluten...

thyroiduk.org.uk/tuk/about_...

You said in your previous post that you had some other blood tests. If you post them with the lab ranges (the figures in brackets after the results) members will advise.

[Wendacox in reply to Clutter]

Hi I have been on 75 before when I decided to self medicate for a while to see if this helped my symptoms after 21 years and always being told normal range for blood results I'm desperate I tried the 75 for 6 months made no difference with blood results or symptoms my results I've been given this week are hand written but does say.. Thyroid function test. ( mm1) abnormal.. Thank you for reply

[Clutter in reply to Wendacox]

Wendacox,

'Normal' is a very broad range. You need to know what your result is and where in range the result is. If TSH was still high on 75mcg you would have required a further dose increase to 100mcg. It is also important to have good levels of ferritin, vitamin D, B12 and folate. Ask your GP receptionist for a printout of the results and write a new post for comment.

[Wendacox in reply to Clutter]

Thank you will ask for printout when I requested full blood tests back in May time as was hoping some vitamin deffiency would show up my understanding of results was that I'm lover end of the range.. I'e

[Wendacox in reply to Wendacox]

I have also mentioned to Dr that I do not feel any benefits from eating really healthy food.. Like my body is not gaining the nutrients etc

[Clutter in reply to Wendacox]

Wendacox,

If your results were at the lower end of the range they were not optimal and you may benefit from supplementing. I would need to see the results to advise how much to supplement.

[Wendacox in reply to Clutter]

Will post copy of results I received in May.. Have tried lots of supplements from chemist and health store with no effect.. Dr tells me thyroxine Is all I need to take.. Clearly not though

[Clutter in reply to Wendacox]

Wendacox,

You need to supplement the right dose and the right supplement for your vitamin and mineral level. It's not a quick fix, it can take months for levels to respond and once levels are good it may be necessary to continue taking a lower dose to maintain levels.

[Wendacox]

Hi I stupidly believed what I was being told by gp that I'm always in normal range so therefore thyroxine is working for me.. Despite telling him how poorly I feel did self medicate for a little while and increased dose to 75, made no difference to dlood test or symptoms.. Have asked for a referal to see specialist but I'm told no.. Guess they want us to pay private

[silverfox7 in reply to Wendacox]

Paying privately does always mean that you get the right things tested or the right advice sadly. Better to arrange that yourself and get advice on hear by posting your results and ranges. Blue Horizon and Medichecks are recommended. Both have offers at times.

[Wendacox in reply to silverfox7]

Hi silverfox.. Do the Dr's have any legal obligations to do the tests if we have the evidence and facts that we are not receiving proper treatment.. I just do not understand that they are happy to turn us away so readily without any furher' investigations when we explain our symptoms and suffering.. What happened to duty of care.. Thanks for advice

[silverfox7 in reply to silverfox7]

You can hear of private doctors not testing everything or saying they don't think it's relevant. I once, some years ago, wanted to have something tested my GP said wasn't necessary. Think that was probably T3. I had to pay a lot, can't remember the amount now but years ago so a lot for then, to justcsee a private doctor who knew nothing about the thyroid so gave me a sheet and told me to tick what I wanted! I then struggled to get my results. He just told me he had them back! I think I was expected to see and pay him again to collect them. I eventually asked the hospital and they gave them too me!

I also went to see Dr Skinner regularly privately. One day he said he was surprised to see me so I said that he always cheered me up! My GP reported him to the GMC as she said he wasn't treating me right as he never wrote to her which he had to do. I refused to let her pass on my name and told Dr Skinner when we were in the food queue at a conference. That was shortly before he died and I got a copy of my notes. I found the copy in my notes that he had wrttien to her and I got a sinking feeling thinking I had given him a wrong address. Then I found her reply!!!!! So never be surprised what doctors do or say. She had been asked to give me T3 or NDT and she ignored it. Good job she had retired my then or another letter would have gone to the GMC. Sorry gone off at a bit of a tangent but heard other tales of tests been asked for and told not necessary.

[Wendacox in reply to silverfox7]

Wow I just find it all so shocking it is complete neglect on so many levels.. I had to litrely beg for full blood test back in May because I felt so ill still despite being told thyroid lvls normal range and thyroxine dose correct. I insised it must be a vitamin deffiency and hoped it was so at least I might get treated for that.. They refuse to test ft3 at our surgery.. I will ask this week if I will have to pay for any in depth test.. Thanks for your help really appreciate it

[Hidden in reply to Wendacox]

Take everything that your GP tells you with a piece of salt. If you can love yourself why not take care of you. Please don't wait another month before acting on your symptoms.

There is no such thing as normal everyone is different. For instance I would not have put up with your symptoms for even 6 months let alone years.

I doesn't matter that you haven't acted sooner now is the time to start.

[Wendacox in reply to Hidden]

Hi.. I do not believe what his telling me.. My question is why cant we be treated on our symptoms why is that never taken into account they go on blood test then when you queston them they act like we have no right.. Thanks for advice

[Hidden in reply to Wendacox]

If you want to go private there is a list available somewhere on here via email of doctors some of our group have found helpful. I would advise against asking to see an endo as more often than not they prescribe equally poor treatment that even better Gps will feel obliged to follow.

[Wendacox in reply to Hidden]

Thanks for the advice. If I pay private for blood test will I then have to pay for private prescriptions will my own gp refuse to prescribe

[Hidden in reply to Wendacox]

Your own GP can refuse but often if you are armed with the right information and private blood tests they will provide something better. Is there a more pliable GP in the practice, more open to reason with? often the ones who are good listeners are better. If you take you blood tests to them you may well get a better result. A lot of us self treat these days for cost reasons and because the battle can be so wearing. I have self treated for several years.I used to pay to see private doctors to advise in the early days but now I am quite confident that my treatment is the best I could get anywhere.

[Wendacox in reply to Hidden]

Sadly live in a small town with only a few Dr's who seem to all be very like minded have also been told recently that treatment for thyroid is the same.. Regardless of symptoms or any other factors.. They swear to me blood test is accurate and thyroxine is the only available treatment which all of us suffering know for fact this information is untrue.. I know lots of very unhappy people in this erea all being told the same thing.. No one knows who to turn to for proper change.. When I asked about local support groups I was simply told.. I doubt it.. I did self medicate for about 6 months increased from 50 to 75 but felt no different maybe I should of increased by more.. But sadly my lack of knowledge and believing that because my bloods indicate normal range I could possibly do more harm than good.. I also have concerns for my mum now as has same gp as me she had thyroid removed 15 years ago does have symptoms of being under but is only on 125 thyroxine daily. I need to do so much more research.. Sorry for my ignorance.. Massive thanks for help

[Hidden in reply to Wendacox]

send all you unhappy people here. You can get some real help. A lot of people who have had their thyroid removed do well on medication called natural thyroid extract. There are several different brands. What ever the right and wrongs of blood tests and different medication the doctors are providing a bad service as so many people they are supposed to be serving arnt happy with what they provide. We are thier customers and we dont like thier product. They need to change or they will sink as nowadays we can go else where.

[Wendacox in reply to Hidden]

Thank you yes you are so right I feel completely let down by service me and my friend who also poorly with thyroid have decided to try and arrange a coffee morning to anyone in erea.. We can at least inform people suffering.. That they can gain help and support on here also share knowledge.. I have been proactive since yesterday and started to print off info I've been given from you lovely people on here.. I hope this will help us move forward within our surgery.. If enough people start shouting someone may listen

[Wendacox in reply to Hidden]

Sorry forgot to ask if you self medicate do you go on your symptoms and not have regular blood tests.. Also do you let gp know this.. I hope you now feel better

[Hidden in reply to Wendacox]

I go on symptoms. I have some thyroid resistance which is hard to treat but I have found some homepathic stuff which seems to help. I recently had a change of medication due to unavailability of usual stuff and I accidently took to much ( I was under a lot of stress and forgot I had already taken some). the new medication is much better for me and a lot of residual symptoms have gone. I dont think personally blood tests are much help for me and I can usually predict result before it come back. After I took too much I saw a locum who who gave me some beta blockers as my heart was a bit galloping then took blood bless him but I knew the result would show a slightly over the range T3, low T4 and suppressed tsh. My usual GP is lush and I always keep him informed ( any excuse to talk to him as he is really lush). he is interested and supportive of my treating myself. Always takes T3 levels when I have had blood taken but no chance of him ever treating me. He is very conventional and always sticks to current practice. I dont ask for blood tests anymore myself. If I take too much I get palpatations, if I take too little I get vertigo and it is quite a fine line. Even if my blood results indicated I needed more or less my body dictates how much I need and I dont want to make myself ill by changing something that works.

[Wendacox]

Thank you so much for advice I will try to print off Dr Tofts pulse article plus more on articles I have been given today.. Although just recently when I have tried to question Dr over my treatment he has told me not to believe anything I find on Web and must believe what he tells me... Who to we go to when we receive such poor quality care?

[SlowDragon Administrator in reply to Wendacox]

Tell him because you have felt so unwell you have been in contact with the NHS recommended support group, Thyroid UK.

Keep reading on here and learn as much as possible.....your GP obviously out of his depth

Hashimoto's is complex disease, can badly affect gut, leading to multiple vitamin deficiencies

[Wendacox in reply to SlowDragon]

Thank you so much for all the advice you have given me today.. I really do appreciate it

[Wendacox]

I agree.. Thank you so much for all the advice you have given me I really am grateful. I will be returning to Dr's this week with new facts.. My new approach to this starts today.. Will post all results of blood tests I receive.