Results advice please before I go back to my GP. - Thyroid UK

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Results advice please before I go back to my GP.

•

Following on from my post yesterday. My GP suddenly after a year of dismissing my chronic fatigue and huge energy crashes, I am almost housebound and I am anxious and agoraphobic since being ill this last year, suddenly he wants to run a ruck of tests if I don't feel less fatigued on 75mg. He wants me to do 2 weeks of 75mg (started this weekend) and then he wants to run more blood work. He did extensive blood work December 2015 and November 2016. I asked him why he wanted to do more blood work so soon and he said because I had chronic fatigue lasting a year and he didn't think at my thyroid levels I should have such bad chronic fatigue that impacts my life.

I wanted to write down all my past results from thyroid tests and I was wondering if anyone could shed some light so I can go armed to my GP when I next see him because he has insisted he runs another HBA1C on me which is bizarre as my HBA1C was done less than 3 months ago and was 35, well within the non diabetic range. He is trying to blame high sugars for the reason I am tired. He said if I also don't respond to the 75mg with sudden energy after 2 weeks then he wants to examine me again and run even more bloods. I don't understand his sudden reasoning for this so I wanted some advice on past results because surely I can be 100% sure that the reason I have chronic fatigue every day, weak thighs, dizzy spells/off balance feelings, feel cold at times and if I go out and over do it well if I even just take the kids to the park or to a shop I can crash and land in bed for days feeling weak. This had improved once on 50mg but recently it's returned. My GP isn't agreeing with me at all, suddenly, yet he left me last year struggling with chronic fatigue and blamed anxiety and depression. I have anxiety and agoraphobia, and yes probably depression this last 12 months.

Results.

August 2015

TSH 5.35 (0.35-5.5)

FT4 10.2 (7-17)

Ferritin 15 (started liquid iron, but had low ferritin for 10 years)

B12 - 212. (Told no need to supplement but I started Jarrow 1000mg)

January 2016 Blue Horizon results.

TSH 6.54 (0.2-4.)

FFT4 14.2 (12-22)

FT3 5.37 (3.1-6.8)

Anti- Thyroidperoxidase abs 11 <34

Anti-Thyroglobulin Abs <10.000 <115

March 2016

TSH 7.51 (0.2-4.)

FFT4 15.83 (12-22)

(strangely FT4 had risen along with TSH rising???)

FT3 5.56 (3.1-6.8)

B12 - 477

Ferritin 34.1

Anti- Thyroidperoxidase abs 10.7 <34

Anti-Thyroglobulin Abs <10.000 <115

May 2016

TSH 9.28 (0.2-4.)

FFT4 15.76 (12-22)

This is when I started a trial of levo 25mg., after this result.

July 2016

TSH 6.99 (0.2-4.)

FFT4 17.53 (12-22)

FT3 - 5.52

Anti- Thyroidperoxidase abs 12.2 <34

Anti-Thyroglobulin Abs 6.7 <115 (This had risen from <10.000???)

B12 - 1070

Ferritin 49

Folate - 17

Vitamin D - 75

I stayed on 25mg (I know big mistake)

September 2016

TSH - 7.95

FT4 16.42

I then increased to 50mg of Levo.

November 2016

TSH 2.66

FT4 18.72

FT3 5.06

I stayed on 50mg levo as instructed

January 2017

TSH 5.74

FT4 17.5

FT3 5.0

In November my GP ran tests and he tested FBC, blood film, HBA1C, random sugar, kidney and liver function, nuclear antibodies, ferritin, B12, Folate, creatine kinase.... There were alot and all were ok other than sodium came in a little low, re tested a week later and fine back up to 138. Potassium 3.4 (range starts at 3.5 so GP not concerned). Random glucose was 8.9 but I'd been very anxious and I'd eaten so it was dismissed with a HBA1C result of 35 so all normal. He does a full sweep every year since I have had fatigue so I have had all those tests plus some, twice in a year. Plus all my thyroid tests. I recently did a Genova saliva cortisol test and my results were raised on all 4 results and the conclusion was stress was the cause of my high cortisol. It wasn't excessively high. I do suffer anxiety and December was a horrific month for me due to stress and an anxiety setback.

I had the antibodies tested 3 times. On the third test they rise slightly and that was once on 25mg levo, normal?

I was diagnosed sublinical last January but not treated until last May. I saught a second opinion last January and the GP told me as I had no antibodies I did not have hypothyroidism. He said my FT4 and Ft3 were fine and it was just a rising TSH. The second GP who took over my care said I was subclinical and due to the crippling fatigue and weakness I had he monitored me every 8 weeks and then we started levo in the May. Now I am just very confused he doesn't think it's due to my thyroid why I have energy crashes, very bad fatigue and weakness. He doesn't think any of this should have led to me being agoraphobic and anxious so he wants to dig deeper yet as I said above he did extensive tests only 10 weeks ago.

Can anyone shed light on all my results before I speak to him again. I am not putting myself through another year of being a guinea pig, I have a real phobia of needles and him wanting to poke and prod all the time because he doesn't believe thyroid is my main problem is causing me anxiety all over again. This whole 16 months has made me an anxious wreck.

Thank you and sorry this got long but I had a heck of alot of results to type out

Julie

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60 Replies

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shaws8 years ago

Change your doctor as he is out of his depth it would appear to me and it is you who is suffering.

50mcg is a miserable dose unless you were so frail with a heart disease.

You are on too low a dose. Change your doctor.

KatherineM_PBC• in reply toshaws8 years ago

Perhaps you could ask your Doc to be referred to an Endocrinologist, or pay to see 1 privately?

• in reply toKatherineM_PBC8 years ago

Thank you Katherine.

• in reply toshaws8 years ago

I've increased to 75mg as of this weekend as advised by my gp. Latest results showed I needed an increase and he suggested 75.

Jose651• in reply to8 years ago

Hi Julie,

Have you thought seriously about getting a different GP?

It may well be the answer. Change is difficult for most of us, but sometimes it is just necessary to make that decision.

J x

• in reply toJose6518 years ago

There are only 2 other surgeries local and they're awful. Ours is the best in the area. I've tired 3 gp's and he is the only one who agreed to give me levo.

Jose651• in reply to8 years ago

Hi Julie,

I have always pressed 'follow' on your posts, as I imagine numerous other members have done.

The reason I do this is because I feel deeply about you and what you are experiencing now and in the past.

We, as in TUK, I feel, from the warm caring replies you get, want you to get well.

So, what is your next step?

I believe you know what it is. The caring members here have your best interests at heart.

We cannot tell you what to do but we can feel down that you are allowing your GP to press all those fragile buttons that you have.

Lots & lots of members on the 3 forums within HU that I had to join and listen to them, have been where you are.

Change is difficult.

I don't like change.

I'm more comfortable in what I ' think ' works until I come to the realization that I'm going round in circles.

Feel the Fear and do it anyway, is a book I suggested you read many months ago Julie.

The Title explains the book. I do understand that Fear will hold you from moving on, I've been there Julie, believe me.

You are doing an amazing job with your lovely Hubby & Children.

Please allow youself to act on the loving advice you get here.

🙏

• in reply toJose6518 years ago

Thank you so much.

I am grateful to everyone for their support and I always take on board things I've been advised and made changes.

I'm standing up to extended family now. I'm taking my vitamins as advised here. Increasing my levo and having my bloods. I'm making lots of changes and I find this forum a huge influence. I'd be lost without you all.

I did buy the book. I'm trying to finish my current book, it takes some time with my brain fog but once that finished it's next on my list.

Thank you for your support.

Julie x

8 years ago

Julie, your GP is out of his depth and isn't worthy of your trust and faith in him. I do wonder if it might be best to take a break from doctors of any description for a good few months to give your anxiety an opportunity to calm down. You can't keep putting yourself through this.

greygoose• in reply to8 years ago

My thoughts exactly.

• in reply to8 years ago

I agree. He wants me to do 2 weeks on 75mgood and if the fatigue hasn't lifted he wants to run more tests for things other than the thyroid but he did extensive bloods 3 months ago. I don't understand what he's looking for but he says thr fatigue is a concern to him. He's yes madwe me more anxious. I honestly just expected a phone call to discussthe latest thyroid results I sent him from medicheckand to suggest an increase, which he did but then he said he was worried about my random sugar from 3 months ago despite a normal hba1c and then said if my fatigue didn't lft with their increase he wanted to test me for even more things. Spiking my anxiety terribly.

I'm going to take a break for 2 months and refuse the tests as I've and enough recently of tests that showed I was ok other than my thyroid. He wasn't concerned then so why now? My only worry is the seed he's planted in my mind. Do I need more tests? Is this more than just my thyroid like he's implying? Which of course rises my anxiety anyway.

Thank you for replying.

Julie x

• in reply to8 years ago

Julie - he's clearly stabbing in the dark, not knowing how to proceed. What you want to avoid is being diagnosed with CFS/ME/Fibromyalgia as that would get him off the hook, not having to 'doctor'.

Look after yourself, eat good food, relax, spend time with your family and remove as much stress as you can. I'm sure this will pay dividends with your health by ensuring your meds work properly. Without pressure you can monitor your progress and decide if and when an increase is appropriate.

Refuse the tests, they're not compulsory and don't have any contact with the surgery. Actually if you have an answerphone leave it switched on.

Please do take care.

• in reply to8 years ago

I totally agree, it's like he's suddenly wanting to look like he's doing something but I've had crippling fatigue for over a year and he knew, he knew very well. All he kept dping was blaming anxiety, saying how we feel effects our energy. Basically branding me depressed because I'd become agoraphobic from being poorly.

In November he tested so many things. I can't undertsand why he would now want to do more tests. He said they were definitive to be sure my fatigue was due to my thyroid and now he suddenly wants to do more. I don't want more tests and I'm going to refuse them for now as I've had so many and I just wanted I focus on my thyroid because surely thsts what this is.

Thank you.

Julie x

Serendipitious• in reply to8 years ago

Sorry to butt in but my GP has recently just referred me for Chronic Fatigue/ME. I had some extra bloods done today for the referral. Should I refuse to go when the appointment gets booked? I'm also seeing an endocrinologist privately and hopefully my T3 will arrive soon.

• in reply toSerendipitious8 years ago

What bloods has your gp done? My gp ran a lot of bloods in November so he could diagnose chronic fatigue but he never referred me to a clinic despite running the bloods. He tested all kinds to eliminate another cause.

Serendipitious• in reply to8 years ago

Hidden They did tests on U&E, LFT, Random Glucose, Phosphate, Calcium, Coelic Serology (TTG) and Creatine Kinase (CK). The phlebotomist asked me if I'd was gluten free which I am as it will affect the result for TTG but I didn't know they were testing for that. Perhaps I would have eaten some gluten to see if the test picks up an actual allergy. Not sure why they do all those tests.

Jose651 I completely agree this will be a waste of time. However what course of treatment did they suggest for you? When I look at the NHS page for CF/ME it talks about CBT!

• in reply toSerendipitious8 years ago

I had similar to you, and more. I still didn't get diagnosed with ME and just told I had depression and hypo. Now he wants to dig and do more tests, he can't make up his mind. He says my level of fatigue is not normal so isn't happy to leave it.

Jose651• in reply toSerendipitious8 years ago

Hi Serendipitious,

Hahahaaa, That was the 2nd app with him. My GP sent me to see him urgently, or so she told my Sis and I when she realised that after Misdiagnosing me for over a year, I was not a happy camper.

She had done 7 thyroid tests in a space of 10/11 months, didn't think I needed to see an Endo. I have had an UAT for 30 years plus.

She went off on Maternity Leave🙏 and a young Locum sent me to see an Endo who did bloods and told me I had Vit B12def/ PA and Vit D def.

Shorty after that I had a bad fall from a step ladder which resulted in numerous injuries, the worst being a bleed on the brain.

She, my GP knew how annoyed I was, and I told her all the above details.

So, where does she send me,.....To the hospital. To be told I have CFS.

I had another App to see Dr in Hospital. I cancelled.

They have sent for me again, app at the end of Feb.

wonder what I'll have this time. 😂

I see to myself now and with the help of the members here, I'm getting there. Waiting on a Hip ReplacementBut so thankful that I was led to TUK.

J 🍀

Serendipitious• in reply toJose6518 years ago

Gosh I'm so sorry to hear that. That must have been so frightening. I know you're talking about it with a sense of humour but that couldn't have been easy to get through. We're really at the mercy of these doctors without any knowledge of our own. Yes I discovered this forum back in October and its been a God send. I do wish I'd known about it years ago when I was first diagnosed. What do you mean by UAT though?

Jose651• in reply toSerendipitious8 years ago

Thank you S, 😊

Yes, it has been a tough, tough 3 years. I have to keep positive , well most of the time, 😇.

When I think about the GPs failure to diagnose correctly, it does get me down.

But I am where I am at the moment and changes will happen, it always does, and hopefully it will be good for us all.🙏

UAT, means Under Active Thyroid, Serendipitious.

J x🍀

Serendipitious• in reply toJose6518 years ago

That's really inspiring I hope that I can also take that approach because at the moment I'm waiting to start T3 and see if it helps me get better. Sorry I thought UAT was User Acceptance Testing 😂

Jose651• in reply toSerendipitious8 years ago

How long did you take to think that one up,👍 Is there such a thing as User Acceptance Testing.

It's like me and LOL and lmao. I had to ask the senderwhat the meaning was. As for Pmsl , 😳 x

Serendipitious• in reply toJose6518 years ago

It's nice to know we can all enjoy a bit of humour 😂

Jose651• in reply toSerendipitious8 years ago

Keep us posted about your change of Thyroid Hormones S.

J x

Serendipitious• in reply toJose6518 years ago

Will do. I'm a bit scared at the moment but I'm not sure why. Perhaps I'm concerned about my T3 journey failing I'm trying not to get my hopes up. Hopefully the T3 will arrive in the next few days. I tried Adrenal cortex extract in December and suffered terrible side effects (you can read my previous post) so I'm going to start very slowly and with a small dose.

Jose651• in reply toSerendipitious8 years ago

Good way to go S, and my thinking is, don't expect big changes in a few days. Give it time from starting until you increase.

It's tempting to just add another 6.25/ 12.50 .

Your body will get used to it S.

Here's to better health.

J 🍀 x

Jose651• in reply toSerendipitious8 years ago

6 months or more ago a Medical Internist in The Local Hospital diagnosed me with CFS.

I told him - politely -😇 "No Dr, I am not going to accept that, but thank you for your time"

He ordered bloods. I enquired what bloods he was checking. He told me, and I said, " my GP did all those tests 3 weeks ago.

They were in front of him on the computer. 😡.

The waste of money is appalling especially when you read on this forum the amount of members that cannot get a simple test for FT3.

Mis Management, how are you?

J 🍀

Angel_of_the_North• in reply to8 years ago

The change in dose won't even have registered in 2 weeks. You need an endo referral.

• in reply toAngel_of_the_North8 years ago

I agree so I'm going to wait 6 weeks then see him if my fatigue doesn't pick up.

Can I ask why you think I need an endo referral?

Angel_of_the_North• in reply to8 years ago

Because your GP is not very clued up and your TSH is very high even though your FT4 and FT3 aren't bad, suggesting that your case may more be more complex.

• in reply toAngel_of_the_North8 years ago

That's been my concern all along. Why my ft4 and ft3 weren't that bad yet tsh kept rising.

spongecat8 years ago

As I understand it, you have just raised your levo to 75mcg..........and he wants to do your bloods again in a fortnight? That's far too soon to really see if this rise is of benefit to you....it needs a chance to flood your body and hopefully make you feel a lot better. Therefore after any change in levo dose the bloods should be done after 6 - 8 weeks and the patient asked how they feel. If necessary keep raising the dose in 25mcg increments until the patient feels reasonably well. Well that's how it's meant to go in principle!

I do so sympathise with the anxiety and agoraphobia. I didn't leave the house for nearly a year unless it was important. I wasn't scared or anything I just didn't have the will, it's very hard to explain. My poor hubby did all the shopping and a million other things. I couldn't even summon up any enthusiasm to plant something in the garden which is so unlike me. Waking up in the mornings after another restless night and feeling as if I had been slugged with a sledgehammer. Get up and want to go straight back to bed after an hour or so. I also couldn't answer the telephone or make a call, even to friends without getting steamed up about it. Fortunately all that went away once I was optimally medicated, which is what you so desperately need.

I'm afraid your GP seems to be grasping at straws and not doing you any favours at all. You are the one who is suffering badly. You really need to change doctors and/or be referred to an endo.

• in reply tospongecat8 years ago

Yes 75mcg is what I've been given this week and he said if after 2 weeks my energy doesn't pick up he wants to examine me and run more bloods tests (not thyroid ones again). He wants to see if I've something else causing the fatigue buthe he has done 2 full MOT bloods in 12 months, the most recent only 10 weeks ago so I can't understand what else he wants to test for.

I can relate totallying to hiw you felt. I was hit by anxiety and agoraphobia in 2013 afafter my brother attacked me and my mother and sisters hurt me and cut me off as I wouldn't let my brother back in my life to keep my own family safe. I had so much fear he would hurt me again I ended up housebound for 6 months. I overcame all the anxiety in 2014 but then I became ill at the end of 2015 and it all flooded back. This timr though it's because of how weak and ill I feel. I am too afraid to go out incase I collapse. I don't want to have visitors as I'm too exhausted to talk some days and I've just lost my social skills. I've been so poorly and hidden away it's had a huge effect on me. I even find the school run causes me panic attacks when I drive. It's horrible what this ill health had done to me. I can't even do appointments, my gp comes to me. Everything I worked so hard to get back after the attack I now have lost again and more so. I hate what this thyroid illness has done. I worry I'm letting my family down. My husband is a star and my children are so understanding.

Thank you

Julie x

8 years ago

My "mild" agoraphobia made me shun any contact with my extended family. Parties I avoided like the plague, fluorescent lights in supermarkets gave me panic attacks when staff would bring me chairs. Bed with the covers over my head was the only place I wanted to be. Like spongecat, meds eradicated all that. Please take care jingyd35, be kind to yourself and learn to say "no" if you are a "yes" person.

• in reply to8 years ago

Thsts exactly like me! I suddenly don't want any visitors. I've good reason with my mother and siblings to feel anxious but I would normally tolerate them for my kids sakes but suddenly thr last 2 months I'm terrified of them ever visiting. So unlike me. I hope meds do help this.

I get the same in shops. Xx

8 years ago

This is exactly what my mums Gp has done to her and she has been under medicated for years as well as diagnosed with a long list of secondary conditions. These conditions may never have occurred if her thyroid had of been treated properly and probably never diagnosed. There is only so much you can take and it sounds as if you are absolutely sick of having loads of random tests done. It's obvious really what needs sorting it's staring him in the face but he is reluctant to optically medicate you for some bizarre reason. As stated it will take a good 6 weeks for any changes to take effect in your medication thyroid wise so he is a)either setting you up to fail or b)completely clueless. I'd go for the second option.

hebden• in reply to8 years ago

I agree KatieKatie 2nd option seems right. Doctors seem to only want to treat the symptoms separately and are blinkered and fail to link these up. The only ones to gain are pharmaceutical companies while people get sicker.

• in reply tohebden8 years ago

The thing is why a second opinion? He's the only gp that diagnosed me. As I said to Katie the other gp told me I didn't even have hypothyroidism. The other gp's there aren't very good. He's the best there. He just doesn't seem I understand hypothyroidism symptoms which is frustrating. Gp's seem to think unless a tsh is over 10 then you can't be hypo or have symptoms. I'm lucky he treated me when mine hit 9.28.

• in reply to8 years ago

The diagnosis is a biggie but you don't owe him your ill health for years because he was the only doctor who did diagnose you. Sadly a lot are just clueless. He is mis managing your thyroid dysfunction and probably will long term also. I don't mean to sound harsh but he is basically the best of a bad bunch. I would as suggested take a break, wait for the med increase to kick in and then go back and assess things. Try and research and get together as much info as you can and be willing to fight your corner if you have to. They seriously don't always know what's best. Another doctor telling you you need antibodies to have hypothyroidism shows how little they know. Someone's thyroid can fail completely without any antibodies ever present and left unmediated they can die.

• in reply to8 years ago

I agree. I will give it 6 weeks. I just can't cope with anymore blood tests to rule out more illnesses. I wish he could accept all the bloods he's done are good and this is my thyroid because he's scaring me something else is wrong. It's triggering my health anxiety and that isn't fair.

I will see how I feel on the 75mg the next 6 weeks and then contact him. I need a break. I need to get my cortisol levels down and I won't with added stress having more tests.

Julie x

hebden• in reply to8 years ago

Second option = completely clueless. Don't know why the doctors seem to know very little about thyroid problems. It should be something they are taught but don't seem to be. My TSH has been increasing yearly for at least 8 years (that I know of) and even with a TSH of 6.90 and rising masses of symptoms I am still told it is not my thyroid. I keep getting told its all in my head or its fibromyalgia and prescribed antidepressants which I refuse to take. I have seen so many health officials but each one has refused to acknowledge my problems or try to treat thyroid issues so I am frustrated at their ignorance and the ease at which they brush me off. I just don't know where the magic number 10 comes from but it is discrimination. I feel like Im slowly dying with the rate I have I dread to think how you have felt with 9.28. My last GP told me that he "wished it was as easy as being thyroid as this is easily fixed with a pill" (his words) but he still wouldn't give me that pill as I hadn't reached the magical 10!

• in reply tohebden8 years ago

I can relate. One GP told me I didn't have an underactive thyroid when my TSH was almost 7 because I don't have antibodies. I saw another GP and he told me I was subclinical so I've stuck with him and got treated. My TSH had to go up to 9.28 before he would treat me but he has and we are now on the third increase.

I was at first told I was just anxious, depressed, chronically fatigued..... I heard it all. Told to increase my anti depressant which I refused to do.

At 9.28 I felt terrible. I was crawling to the bathroom some days. I couldn't cook the kids dinner without having a chair to keep sitting to take breaks. I was showering every other day and that was hard to do.

My TSH was 5.35, then 6.8, 7.5 and 9.28 and by that point I said enough is enough, I need treating as I feel terrible. He said it was as close to 10 as we could get so he treated me and I slowly improved. I am still not well but when I look back to early last year physically i am a little better. Mentally though it has destroyed me. I have such awful anxiety and agoraphobia because of it. It's awful. For that I get no help and have to go private for therapy which isn't much use seeing as until my physical health is sorted I will keep feeling terrible.

I hope things look up for you soon. I hope your GP will listen. Keep having your bloods taken every 2-3 months with Blue Horizon or Medicheck. Send them to your GP with a cover letter explaining your symptoms, and keep doing that until your GP listens and sees the trend in your results rising. It's what I did and eventually he came to see me and said I was right all along.

Good luck

Julie

hebden• in reply to8 years ago

Thank you for your kind words of support. I gave my GP the Thyroiduk symptom list where Id ticked nearly every point and he just said he would scan it and then started talking about doctors learning only page 1 of a 20 page medical training book so doctors can't know everything. He then said fibromyalgia is page 21 so no one would know about this. (I was diagnosed with fibro 3 years ago and I feel as this was a cop out).

Good luck to you too.

Hugs Joolz.x

• in reply to8 years ago

Thanks Katie.

I've tied every gp in the surgery. 1 told me he would never bother to test my thyroid again even when my tsh was 6.8 because he said I needed antibodies to have hypothyroidism. He said he wouldn't give me levo as I didn't need it. My gp now is great and will come to the house to see my and have the only gp who diagnosed the thyroid and treated me but yes he doesn't understand symptoms and seems to want to keep digging and I'm not doing anymore. But by saying no to more tests he's planted that seed in me that I need them grrrrr.

LiTai8 years ago

Buy a copy of 'Living Well with Hypothyriodism: What your doctor doesn't tell you' if you don't already have it, read it and then once you have finished GIVE IT TO THE DOCTOR TO READ!! FYI - I'm unlike most of the people on this forum in that I don't have a thyroid gland at all, I had cancer, I had it removed and as I like to say to people when they ask how I am... 'Not dead yet' which I find to be a great state to be in 😊 When I was diagnosed, the reason for my diagnosis was because I went to university and changed doctors to the one there; they had a doctor who listened to my symptoms, found what he thought was a massive goitre on my neck and sent me off to the hospital to get a needle aspiration. I'm still with the same doctors even though I left university 19 years ago and have moved house 4 times because I TRUST him and the nursing staff, one of whom also has hypothyroidism herself. When I was diagnosed my doctor decided to get as informed as possible about my condition because even though his surgery is huge he'd never had a patient with thyroid cancer before. Your doctor needs to understand that you are not 'of a nervous disposition' but brain fogs, disorientation, feeling cold when it's nice out, feeling like you have flu because your bones are aching, sleeping like the dead but waking up so tired you could easily do it all again, being snappy and wanting to avoid people just because you literally can't face being nice to anyone (and finally my personal favourite) eating a well balanced healthy diet and putting on weight because your body doesn't have enough levothyroxine in it to metabolism what you are eating are all symptoms of hypothyroidism and not whatever else that he might be thinking. Obviously there are way more symptoms than I've listed but my point is listen to your body it's telling you that you need more thyroxine. I have an amazing doctor and had a great endocrinologist before he retired BUT there are still occasions when even I go 'off the reservation' and self medicate by increasing my dosage, why?, because I know if I go away for a week by evening 3, I will be in bed by 9pm like a child unless I increase my dosage. LISTEN to your body it's telling you it needs help.

Ok sermon over, but I hope you start feeling better soon cos being under medicated is not something I'd wish on even my worst enemy!!

• in reply toLiTai8 years ago

Thank you so much for replying.

This gp I've seen the last year or so is the best there. He's the only gp that agreed u had hypothyroidism and treated me. I was worried he wouldn't suggest an increase this time. My tsh had gone down to 2.6 but now risen to 5.7. I was worried what he would suggest but he rang me and insisted I went up to 75mg. That was a relief, but him suggesting more tests and worrying about diabetes when my hba1c is normal just set my anxiety racing.

I've had anxiety since 2012 after my brother attacked me but I overcame it alot and was back our living. Then a year ago my chronic fatigue hit hard, I felt weak and was having huge energy crashes just doing housework or a trip to the park. I'd be bed ridden for days some times for days after going out. I knew something was very wrong and thsts when I had tests and I went private with my thyroid texts because the August before on the NHS I saw my tsh was 5.35 and ft4 10.2. My gp at the time dismissed it totally and told me I couldn't have hypothyroidism without antibodies. I knew he was wrong. This gp now has kept an eye on me, done tests, come to my hoise for check ups. He'd diagnosed and treated the thyroid but I hate how he still looks for other diagnoses which flares my anxiety up even more. I wish he would stop doing that.

Thank you. I shall read that book. I need to learn.

Julie x

Scazzoh8 years ago

Julie, Your doctor is running all these tests, but not offering you any treatment. The other doctor you saw didn't know what he was doing either. You can have an underactive thyroid without antibodies. Your TSH is far too high and should be below 1. Fear and anxiety can be symptoms of an underactive thyroid. It's no wonder your cortisol levels are high. That will impede good thyroid function as well. I was in a similar position to you last year: I had a thyroid 'crash', was bedridden for months after various rubbish diagnoses: virus, anxiety disorder, chronic fatigue. My doctor was only interested in treating my depression and anxiety and dismissed the idea that my symptoms might be thyroid related. I began self-medicating on NatureThroid in August and am now tons better. I am about to stop the anti-depressants after gradually reducing the dose. You need to be on a dose of thyroid hormone, whether Levo or T3 or NDT, which eliminates your symptoms and makes you feel well. If you don't get this from your doctor, have you thought about self-medicating? As you know, there is a lot of support and advice here. Don't put up with this. You can get better. S

• in reply toScazzoh8 years ago

Thank you.

My gp has increased my levo to 75mg. He's being good with the increases every 2 months or so. I can't complain about that side of things because he is increasing my thyroxine and he has to do that slowly.

I am concerned why my cortisol is high but hoping stress is the cause as I have been under a lot of stress the last 4 years. I hope it doesn't mean though that it's not true hypothyroidism, and it's just high cortisol effecting thr tsh. It confuses me.

My tsh came down to 2.6 but then that dose stopped working. Im hoping 75mg will be the dose I need.

Thanks

Julie

8 years ago

Are there no other Gp surgeries in the area? The best people to ask are older people they will tell you if a surgery is rubbish or not. That's why I refuse to register at the surgery in our village because you hear all the older people on the bus talk about how they won't go there because they are rubbish lol. I am currently 29 weeks pregnant with severe SPD in my hips and pelvis and can hardly walk let alone do housework or run after the kids(I was born with hip dysplasia), have gestational diabetes and injecting insulin 4 times a day and getting hypos and to top it off have a stinking virus. The only thing that is being managed well is my thyroid disorder and vitamin levels. My depression and anxiety went once optically medicated thyroid wise. I self medicate. I've seen the nhs about everything else....says it all. I don't trust that they do always want us to get better at all, it's more maintenance and go away. That is totally cynical but that's my oppinion. x

• in reply to8 years ago

There's 2 more surgeries and trust me they're bloody awful. I've known people who've used then then come to our surgery.

I'm lucky he is treating the thyroid. At least he's not saying I can't have increases in levo and he is working alongside me with that.

Julie x

• in reply to8 years ago

Good just get as much info as you can though which I am sure this forum will help with. I have a pretty useless doctors also. There is one good doctor at the surgery but you can never get in to see her x

8 years ago

humanbean could you offer any advice please before I see my gp? I always value your opinion. No problem if you can't. Thank you.

Julie

humanbean• in reply to8 years ago

The thing that I have never understood when I've read your posts is why you trust doctors so much. I can't see how your trust is justified. Every time you come in contact with them you end up miserable, anxious, and fearful.

A true story, unrelated to you or the thyroid ...

Many decades ago there was a rare disease that struck men almost exclusively. They became gradually more and more paralysed and uncoordinated, they had issues with nerves seeming to stop functioning that affected almost any body system. These men ended up in wheelchairs, or bedbound, and eventually they always died.

Then the cause of the problem was discovered. These men were losing the myelin sheath surrounding their nerves. Once the cause of the problem was found a test eventually followed.

It then became apparent that there were lots of women with this disease too. In fact there were vastly more women with the disease than there were men. So where were those women and what had happened to them before the test was developed? They had been put into mental hospitals, or left to rot at home. They had been treated with dreadful drugs, some had been lobotomised, they had had ECT (electricity through the brain). This had all been done because the women had been diagnosed with hysterical paralysis. They didn't get up and walk and work because they were lazy, didn't want to work, and wanted to be waited on hand and foot. Some doctors in Victorian times and in the early 20th century had recommended beatings as the cure for this hysterical paralysis (to beat the laziness out).

How is hysterical paralysis known today? It is known as multiple sclerosis.

Any disease which affects women only, or women more than men, is treated with contempt by the medical profession. There is a built in assumption in the treatment for such diseases that women are making their symptoms up, exaggerating them, avoiding work, being lazy, and the sufferers are mentally ill. Hypothyroidism is not exempt from these assumptions, which are still alive and kicking today.

I wouldn't trust a doctor with my thyroid health, ever.

I'll write another post after this one, which will be less waffle.

• in reply tohumanbean8 years ago

Thank you.

I guess I was just always brought up to believe you trust your doctor but I'm learning slowly not to. After how anxious he's made me this last 4 days I'm losing all faith. I've been worried sick have I even got hypothyroidism, is it must glucose or is it something else that he wants to test? It's not fair putting all the pressure on me. I've had tests, I've co-operated and had a full MOT only 11 weeks ago and noe I feel I have to have even more and I'm just so exhausted and weak. Which makes him concerned but I'm just so drained from all the worry and hopefully my thyroid rocketing again..

humanbean• in reply to8 years ago

Yes, you have hypothyroidism. My test results were better than yours. Nevertheless, I treat myself for hypothyroidism and feel sooooo much better for it.

My advice? Stop seeing doctors and treat yourself. The relief is absolutely unbelievable.

• in reply tohumanbean8 years ago

Thank you.

I think he's just planted that seed that something more sinister is causing my crippling fatigue and energy crashes if I even just take my kids to a park or like today do hoovering. I'm absolutely exhausted.

humanbean• in reply to8 years ago

I think he wants to diagnose you with ME or CFS. Once he's done that he doesn't have to treat you again.

He might make an exception if you broke a leg. But I wouldn't bet on it.

• in reply tohumanbean8 years ago

I suspect that as he said in November he wanted to rule things out before he could diagnose cfs but then he said no more about it and just blamed the thyroid and depression.

humanbean• in reply to8 years ago

Your results :

TSH : In every single test yours is too high, suggesting that the treatment dose you are on for thyroid is not high enough. The doctor who said he would test you two weeks after raising your dose of Levo is just looking for excuses to reduce your dose again I suspect. He is clearly looking for something, anything, to diagnose you with rather than treat you adequately for hypothyroidism. Treating hypothyroidism but not following the stupid rules can get doctors struck off or disciplined, and they know this, so they are fearful and anxious themselves.

Free T4 : In every test this is mid-range or lower. To have a result in the top quarter of the range (if range is 12 - 22) you would need a result of 19.5 or more.

Free T3 : Your results often seem to get close to the top third of the reference range, suggesting that you are a good converter. And once you were on 50mcg Levo you actually reached the top third. There is still room to improve your level. With more Levo you may get it to the top quarter. But since you still have so many symptoms you clearly need more Levo, or possibly you need NDT or Levo + T3 or T3 only.

Incidentally, my TSH has never gone above "just under 6". My antibodies have always been negative. I treat myself with T3 only and I feel better now than I have done in ages. It might be scary to treat yourself, but the fear wears off incredibly quickly.

Ferritin - still too low. It's a shame you don't have a reference range, but assuming the top of the range is 150 then you need to get it up t a minimum of 80, and possibly up as high as 120. It depends on how you feel.

Vitamin B12 : Your level of 1070 was great. You need to supplement enough to keep it there.

Folate : I've only seen one result for folate of 17 - no reference range. Reference ranges vary a lot. I've seen them with top of the range in the 20s, the 40s and the 60s. For your body to make full use of the B12 you've given it you need good levels of folate. I always try and keep mine at the top of the range. I once had feedback on a doctor's report from BH saying that despite my folate level being slightly over the range this wasn't a problem. I take a B Complex every day. You need to raise yours.

Vitamin D : A level of 75 is barely adequate. You really need to supplement this to get it up to 100 - 150. I would suggest 3000 iU - 5000 iU for a couple of months then reduce to 2000 iU to keep the level where it should be.

Potassium : I normally have a level of potassium somewhere around mid-range. I've only had a low level once. At the time I was very ill, although the low potassium was not a cause of this illness but an effect of it. The effect on me was terrible. I had muscles that twitched and cramped and spasmed. The pain was awful. Your doctor may be happy with a potassium level under the range but then he doesn't have to live with it does he? You should look up potassium-rich foods and try and eat a couple of portions per day.

Sodium : Having a low level is not good for you. Even if your result got a bit better it was still in the lower half of the range. Salt contains sodium and a low-salt diet is not good for people usually. Could you put salt on your food once a day?

Potassium/sodium again : There is an alternative that might suit you as a treatment you could try. There are electrolyte drinks sold without prescription for people who have diarrhoea - Dioralyte is one. Boots and Tesco sometimes sell their own brands and they are quite a bit cheaper, but they run out of stock a lot. Electrolyte drinks are safe enough to give to babies. They give people sodium and potassium in a simple flavoured drink. It comes in sachets of powder which have to be stirred into a glass of water. Buy some of these sachets and try taking one in the morning and one in the late afternoon or evening for a week or two and see if you feel any better.

It is possible to make your own electrolyte drinks for almost nothing, although they won't taste as pleasant as the manufactured ones.

en.wikipedia.org/wiki/Oral_...

As for your HbA1c I don't know why your doctor is re-testing this. He's just wasting money because yours is absolutely normal.

• in reply tohumanbean8 years ago

Thank you for your reply.

My ferritin range is 15 to 150. It's always been low, as low as 8, 4 years ago. I got it up to 49 in the summer but thr nhs test in November showed it was 34 which puzzled me.

Folate range is up to 18 so 17 was the last figure.

I still need to purchase k2 to take with my d3 spray. I use a d3 spray but need to purchase that k2. I keep forgetting.

I'm supplementing with a bit complex now but on top I also take jarrow b12. I'm taking it daily again. My result last July was 1070 but November on the NHS results 477. Puzzling but I had stopped supplementing daily, it was every other. Now I'm doing daily with 1000mg.

I am puzzled about the hba1c. In late 2015 my gp tested it twice as he was convinced it was why I was fatigued. It was 38 and 3 months later 41. 42 to 48 is pretty diabetic so anything below is non diabetic rangeven. Gp wasn't at all concerned and never suggested a re test. He tested it 11 weeks ago when he did a full sweep of bloods. It was 35 so even better and I tested it private with medicheck last may and it was 35 which I never told him about. Now I've had a random glucose at 8.9 he is saying he has to re test it every 3 months despite the hba1c being 35 on the same day of the random sugar that was raised.

He doesn't want to test my thyroid in 2 weeks, he wants to examine me in 2 weeks if my energy isn't any better on 75mg of levo. He said he will examine me any do more blood tests to rule out other causes. This confused me because in November he ran a long list of bloods as long as my body. All fine other than the sodium and glucose.

I really tested the sodium with medicheck 9 days later and it was 138 (135-145) gp was happy with that. I started adding himalayan salt to a couple of meals a day and he told me to cut down on herbal teas Sands was drinking a lot of camomile tea. I threw 8 cups down me the day of the test due to anxiety of having a blood test. So I went to the loo a lot lol!!! He said that'll be the cause of the low sodium and potassium 0.1 under range. That's why he wasn't concerned. I also don't have low potassium symptoms. No muscle spasms or pains.

My tsh has climbed back up from 2.6 go 5.7 so we've gone up from 50 to 75mg. I'm 3 days in and praying it helps. My fatigue is pretty crippling. I saw a huge improvement when the tsh was 2.6. 50% better and my mood felt good and I was far less anxious. I've had awful anxiety and agoraphobia this last year since feeling this crippling fatigue and leg weakness. Also I'm so afraid of the energy crashes that land me in bed for 2 days I'm afraid of over doing it. It's no wonder I'm an anxious wreck lol!

My concern is were my ft4 and ft3 ever bad enough? Or can a high tsh alone cause how I feel? And be enough to diagnose hypo. I'm totally exhausted daily. I even get anxious taking the kids to school in the car due to how fatigued and weak I feel. It makes me feel awful all over. Some days I have less fatigue and on those days can do housework, drive with no anxiety and feel I can do all the jobs that need doing..then on days my fatigue is bad I cook the meals and have to rest all day. Some bad fatigue days I struggle to even get in the shower. It's horrible and having 3 children very difficult.

Thank you for your kind reply. I really appreciate your help.

Julie