Fed up!

[Saz1975]

Hi everyone, am new to this page & hoping somebody can advise me? I have been hypothyroid for 18 years, I hardly understand this disease & my surgery just don't seem to get it!!! I have my T4, TFT &TSH checked at my GP surgery, they all come back fine so my GP won't refer me to anyone as I'm medically sound! But I have horrendous symptoms! I'm at my wits end and don't know what to do? Any help would be greatfully received! 

[Pastille]

Welcome Saz1975  , 18 years!! I'm not suprised you are at your wits end !! Hopefully you will finally hear the things you want to hear from these people. I did. First steps are usually to obtain all blood test results and post them on here with the ranges in brackets. Then people can help you more. Contact your surgery, ask them for the actual figures in your results, they may give you a print out if you ask them. You are entitled to these so don't be fobbed off, it is against the law for them to withhold them. Get them ASAP and post them on here. It's high time you got some help!     

[Saz1975 in reply to Pastille]

Hi Pastille, I hope so, I never knew hypothyroid was as big as it is! I don't understand why my GP is so not bothered! 

[Pastille in reply to Saz1975]

Unfortunately there is not much training in thyroid issues and the gp's tend to stick rigidly to the lab ranges. What your gp classes as 'fine' or 'normal' is highly unlikely to be either. I think you will find that the people on here who have actual personal experience of the sickness will advise you much better. Good luck, I hope you are on the road to recovery very soon, you have suffered for a long time by the sounds of it

[Saz1975 in reply to Pastille]

I'm going to go to my GP surgery today & get the printout & then come back here! I sat in her room last Friday, almost begging to look into my hypothyroid more, but she said my TFT was fine and within range so she couldn't refer me on! I was almost in tears, explaining all the symptoms I have & how it points to my thyroid, but she said it sounded more like fibromyalgia & talked about referring me to a pain clinic! I never realised hypo is an auto immune disease & has so much control over my body! I actually can't quite get over it! 

[Pastille in reply to Saz1975]

Yes there are 300 plus symptoms     life is so hard when we are under medicated. It was for me anyway. My gp would have left me on 50mcg of levothyroxine and I would be on my back if I hadn't have found this site. It's quite a journey and there's a lot of info to take in but don't worry you will get there   I actually quite like my gp but I am well aware that he knows very little about thyroid health so I have to take my health in my own hands if I want any quality of life. So first things first, get ALL blood results you have had done for thyroid function including Ferritin, folate, B12 and Vitamin D. If you haven't had these done then it's advisable to get them done too as when we are hypo we have low stomach acid which hinders our nutrient absorption so you are highly likely to be deficient in at least one of these and possibly all three, contributing to you feeling terrible. 

[humanbean in reply to Saz1975]

Have you ever had your vitamin D levels measured?

Fibromyalgia is often diagnosed when the problem is actually undiagnosed or inadequately treated hypothyroidism and/or vitamin and mineral deficiencies.

Low vitamin D will result in joint and muscle aches and pains and also depression. In my own case my vitamin D wasn't even particularly low, but I was amazed how much my pain reduced and how much better I felt with my levels increased to optimal.

We would need to see blood test results to see what is low. Also, you'd be surprised how often people get told something is normal, and then it turns out the test was never even done.

Although you are legally entitled to copies of your blood tests, be aware that there are loopholes in the law, mainly relating to mental health problems. In other words, if a doctor believed that letting you have copies might make existing mental health problems worse, then your request can be refused. It is for this reason that a receptionist cannot agree to give you copies of your results without the approval of your doctor - he/she is not qualified and can't decide whether the loopholes apply in your particular case.

As a result, don't expect to get the copies you want today. (You might be surprised though - sometimes people do get them when they first ask.)  A doctor has to agree first. If they ask why you want them, you don't have to answer, but just make up something innocuous anyway, don't tell them you don't think your thyroid is treated properly!

Tell them you'll be back to collect the printouts early next week. And ask how much it will cost - it should only be a small amount - perhaps a pound or two at most.

[Heloise in reply to humanbean]

HB, have you read this article?  Would you have any thoughts about it if you have?  fearlessparent.org/suppleme...

[humanbean in reply to Heloise]

I haven't read that particular article, but I've read articles that are similar.

My thoughts on it are based on my own experiences of vitamin D supplementation. I don't have the biochemistry knowledge to judge it on anything else.

I had a dog until a few months ago. For over 12 years I walked her twice a day, although sometimes those walks were very short in the latter years because my health was poor.

My vitamin D levels were not optimal when I first had it measured, despite all those years of exposure to sun, wind, and rain. Increasing my vitamin D levels with supplementation enabled me to walk far more easily than I had been doing for a long time. My muscles and joints have loosened up, and I walk much more fluidly than I did before.

I've run out of vitamin D and not immediately replaced it a couple of times. My muscles and joints have started complaining within a few weeks. Starting to supplement again brings quick relief.

When I first started supplementing vitamin D  I wasn't aware that it caused some people problems. I'm glad I didn't because I would probably have dithered indefinitely, worried about making myself worse. I was so ill a few years ago, with such bad brain fog, that just making a decision was almost impossible a lot of the time. I might have delayed taking vitamin D for a long time.

I have experimented with quite a few supplements in the last few years. Some were a disaster and were quickly given up. I do my research and hope for the best. I can't afford to test everything that I would like to test, so my only choice is to use myself as a guinea pig.

I have read on this forum (and others) that vitamin D supplementation makes quite a lot of people feel a lot better if their levels have previously been low. I also know (now) that some people don't tolerate vitamin D supplements very well. When someone posts a vitamin D result that is below optimal I usually, nowadays, mention that some people don't tolerate vitamin D very well so the person reading is alerted to that fact.

The options I have now are :

1) Stop talking about vitamin D altogether.

2) Start telling people to be wary of vitamin D, make them worry and dither and put off supplementing because it might make them worse.

3) Do what I've been doing since I learned about the potential problems with vitamin D - mention the possibility that some people might not tolerate it. I have no desire to frighten people about vitamin D supplementation, particularly since I got so much benefit from it, and I do mention that not tolerating it is not common (as far as I can tell).

I can only hope that people do some research of their own when someone recommends a supplement. Nobody can be trusted to know anything about anything on an internet forum, so self-preservation behaviour is essential!

Sorry this became an essay.

What do you think we should be telling people about vitamin D, if anything?

[Heloise in reply to humanbean]

Thank you.  I'm still trying to find out how common this may be but I would definitely encourage people to try supplementing if their levels are low and then keep close watch on how they feel after using them.  Even Dr. Mercola prefers sun over supplements for some reason.   But I think intelligent trial and error is almost unavoidable until more research is done. 

I'm glad it had a good effect on you.  If you run across any similar articles, I would appreciate hearing about them. 

[humanbean in reply to Heloise]

This article is very good. It isn't giving the same information as the one from the fearlessparent site, but has lots of things in it which people should consider before supplementing vitamin D.

precisionnutrition.com/stop...

[Heloise in reply to humanbean]

Yes, the article is opening up the conversation.  I'm thinking that all D testing should include both calcetriol and calcediol because if one is very low and the other above range it actually verifies that receptors are not accepting it and becomes inactive.  That could be one recommendation (if anyone will do it). 

[humanbean in reply to Heloise]

It would be safer. But there are lots of things I've done that I could have done more safely with more testing. The problem is financial - I simply don't have the funds to check everything I want to, so I do the things I consider to be essential and unavoidable. *Sigh*

[Heloise in reply to humanbean]

Oh no, HB.  You appear to be doing well and there is no need for it to be on YOUR priority list.  This would be more for those you cannot seem to raise their D level and obviously have a problem.   I would just keep that in mind if you happen to notice that in others. 

I  had a very bad sunburn on a beach vacation when I was younger and wonder if that somehow has corroded the mechanism for my vitamin D absorption.

This article is very interesting!  I'll check out more of this website. 

[Heloise in reply to humanbean]

How do you find more articles at Precision Nutrition if you know?  I saw the different programs they offer or was that vitamin D page just a random posting but no archived literature?

[humanbean in reply to Heloise]

There is a search box on this page :

precisionnutrition.com/blog

which works quite well.

Also on the same line as the search box they have organised their articles into categories. Click on "More" for lots more categories (that, to me, are the more interesting categories).

[Heloise in reply to humanbean]

Yes, those topics are great and they seem very informed.  Thank you lots, HB.

[Pastille in reply to humanbean]

Whenever I have made a decision to add any supplement I almost always then read something that makes me question it. So I agree that trying it is the only way really. I also keep in mind that being hypo with low stomach acid, it's probably best that we supplement than don't. Besides I normally soon find out if something doesn't suit. Still it's good to have an open mind so I am grateful of posted links

[Heloise in reply to Saz1975]

Unfortunately it's a realization that almost EVERYONE here has come to.  Education is really necessary and you may end up with self medication as well.  But don't fear, you can improve I'm sure. 

stopthethyroidmadness.com/t...

[humanbean]

I'm sure it could. Excipients are needed in all sorts of pills, in order to turn active ingredients into something people can swallow.

[SarajSmith]

Hi guys, I'm hoping you understand these results as I certainly don't! If you could tell me that would be amazing! 

Serum sodium 139mmol/L

Serum potassium 4.4mmol/L

Serum urea level 4.9mmol/L

GFR calculated abbreviated MDRD >90mL/s

Serum creatinine 71umol/L

Serum free T4 level 15pmol/L

Serum TSH level 0.8mU/L

Whatever you could tell me would be more than I know now! Thanks x

[Heloise in reply to SarajSmith]

Sarah, can you find the ranges which are included with you results.  The only on I can comment on is your TSH which is excellent even though your FT4 doesn't look that high generally speaking.   Those are the only thyroid tests.  I'm not familiar with the GFR MDRD.  Were there any high or low after each of the results.

If you click your own name and then on your personal page click "post message" your question will be seen by all the members.  No one is seeing this post of yours except people who posted on this thread.  I'm sure you will get more comments and if you can include the ranges it would be helpful. 

[Heloise in reply to SarajSmith]

I looked up the calculator for GFR.  egfrcalc.renal.org/

[SarajSmith]

Hi Heloise, thanks so much for looking through the results for me, I forgot to put the ranges, shall I put them here then post for all the members? Il put them here anyway:

Serum sodium 139mmol/L 

133-146mmol/L

Serum potassium 4.4mmol/L 

3.5-5.3mmol/L

Serum urea level 4.9mmol/L

2.5-7.8mmol/L

GFR calculated abbreviated MDRD >90mL/s

Serum creatinine 71umol/L

45-84umol/L

Serum free T4 level 15pmol/L

8-19pmol/L

Serum TSH level 0.8mU/L

0.1-5mU/L