Still undiagnosed thyroid issues!: Saw GP this... - Thyroid UK

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Still undiagnosed thyroid issues!

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Saw GP this morning armed with my private blood results and full list of symptoms. He half smiled as he looked at both documents and half listened to me. He then handed both back and told me that I am not ill. Free t3 and free t4 have no bearing. The fact that I am so near the bottom of the range on for free t3 on the blood results means nothing. I explained how I've been feeling since 2013, being signed off work twice (once for 3 months in 2013 and again for 4 months in 2015), that work have been VERY patient but that can't go on and that on a good day I only feel about 45% like the real me. His advice was that I need more exercise and should be out doors more instead of looking on the internet for symptoms. He was categorically clear that I do not have any thyroid issues. He has advised that he will run another set of blood tests for me "if that's what you want" (a fasting blood test is booked for tomorrow morning).

I know that he just wanted me out of the surgery and I feel I am stuck! I have placed an order of wp thyriod thanks to a pharmacy recommendation pm'd to me earlier this week and am just waiting for them to arrive. But based on my bloods below, what would anyone here recommend? Do i have a thyroid problem or am I just looking for a solution to a problem that doesn't exist? Any help would be appreciated. Thanks.

Thyroid Function

THYROID STIMULATING HORMONE 1.10 mIU/L Range: 0.27 - 4.2

FREE THYROXINE 15.6 pmol/l Range: 12.0 - 22.0

TOTAL THYROXINE(T4) 73 nmol/L Range: 59 - 154

FREE T3 3.9 pmol/L Range: 3.1 - 6.8

Thyroid Antibodies

Thyroglobulin Antibody 14.9 IU/mL Range: 0-115(Negative)

Method used for Anti-Tg: Roche Modular

Thyroid Peroxidase Antibodies 12.6 IU/mL Range: 0 – 34

Method used for Anti-TPO: Roche Modular

Read more about...

64 Replies

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HarryE9 years ago

Have you had your iron, B12, Vit D & folate checked?

• in reply toHarryE9 years ago

Hi Harry. GP said he will run full tests including those areas but I will query and confirm this with the nurse in the morning when (s)he takes my blood.

GP had me in and out of his office in less than 10 mins. The offer of blood test was to speed me out of the door.

galathea9 years ago

Tbh it doesnT exactly look like its a thyroid problem..... You have a tsh near 1 and the free t4 and free t3 are within range..... also you donT have antibodies. However, there are plenty of things which mimic low thyroid.

Low iron, low ferritin ( below 70), low d3, low b12- ( below 500). Heart problems can all make you feel like poo and really fatigued as can low adrenal function.

Suggest you insist on getting these checked, with the exception of the adrenals...... They need a saliva test and the only way to do this atm is privately. It will cost about £75. Details on the thyroid uk home page under testing... Www.thyroiduk.org.uk

If all of the abouve are well in range and you feel no better, then a trial of thyroid hormones might be warrented..... But its really important to get everything else tested first.

Xx. G

• in reply togalathea9 years ago

Thanks Galathea. Hopefully iron, ferritin, b12 and d3 will be included as part of tomorrow's blood test. My free t3 is only just in range though so that does concern me x

Marz• in reply to9 years ago

You have to ask for the B12 - Ferritin - Folate - D3 to be tested - it is NOT included in the FBC - or Full Blood Count. I am guessing that these will be low - hence your FT3 is low in range.

All the above vitamins and minerals need to optimal for the T4 to convert into the Active hormone T3 - when they are low you can feel horribly unwell. Many of the symptoms of B12 deficiency are similar to being Hypo.

b12deficiency.info/signs-an...

Scroll down in the above link to view the signs and symptoms.......

• in reply toMarz9 years ago

Thanks Marz. I have been taking 5000mcg sublingual b12 since Jan 2016 and 10,000 IU d3 (5,000 liquid and 5,000 capsule) as well as k2. I also take feroglobin plus, a 'b' complex tablet, a multi vitamin and a digesrive enzyme tab. Phew. I think that's everything! All started Jan 2016 but it may take a while to get up to level I need I suppose. Am worried that although I am not feeling the benefit, I may have pushed up my levels sufficiently to skew readings for tomorrow's blood test.

I don't know what else I can do for myself that I'm not doing. 😉

Marz• in reply to9 years ago

Once you are taking B12 - the blood test is not valid. This is detailed in the Guidelines your GP should have read. Not worth having the test. Taking supplements can skew the result for months - as told to me by the Chairman of the PAS - Martyn Hooper when discussing my grandson.

Raising levels with supplements can take many months - so its a slow process.

With the Active B12 - the result is not affected by taking B12. However both tests are only a guide and far from accurate I have read on the PAS forum here on HU.

• in reply toMarz9 years ago

I told him about all the supplements and asked him that as a specific question and he said no, it won't affect the results! Even to me that sounded wrong. Surely if I am taking supplements to improve my levels, this should show up in a blood test. I think the offer of the test was to get me out of the room and therefore he isn't intending to change his mind no matter what. Or am I being too sensitive and cynical?

Marz• in reply to9 years ago

bcshguidelines.com/document...

Well here are the Guidelines which states that once on B12 further testing is of no value.

• in reply toMarz9 years ago

Thanks Marz. Tbh I don't think my gp cares either way. Have had a quick scan of the document and his response to my question regarding the supplements impacting the blood results was WRONG. His attitude throughout said it all though. Am feeling drained.

Marz• in reply to9 years ago

Run off a copy for your GP - highlight the relevant part and leave it with him at the end of your appointment.

• in reply toMarz9 years ago

Good idea. Thanks. I'll do that. It can't damage our relationship any further.

Marz• in reply to9 years ago

Write on the envelope - New Guidelines for the Treatment of Folate and B12 Deficiency - just to get him interested - rather than putting his name

Good Luck !

• in reply toMarz9 years ago

Oooh. I like your style! Thanks Marz x

Marz• in reply to9 years ago

...many years of experience ! Will be 70 this year

• in reply toMarz9 years ago

I may have to beg you to become my thyroid and gp mentor (guru!). I hope you are enjoying every day. Now is the time! 😆

I appreciate all your help today x

Marz• in reply to9 years ago

You are welcome. Do not forget to let us know the outcome....

thyr01d• in reply togalathea9 years ago

Thanks Galathea, these figures are very helpful.

9 years ago

Thanks. I do too but I don't know where else to turn!

9 years ago

Sorry. I meant to say:

Thank you. I think my free t3 IS too low but don't know what else to do to help myself without medical intervention x

That's better!

galathea• in reply to9 years ago

Do you plan to check those adrenals?

• in reply togalathea9 years ago

I do!

Will I need to stop taking all supplements prior to the saliva test to get a true reading? And if so, for how long?

Thank you x

galathea• in reply to9 years ago

No, only adrenal suppliments if you take them.... Things like nutri adrenal extra.... I did the test and was surprised to find my adrenals were all over the place. It took me two years to fet my rythm right again but it made a much bigger difference than the thyroid meds ever have. If you have the patience its a good idea to measure temps too.... I posted about this... Will add the link in a coupke of minutes.....

G x

galathea• in reply togalathea9 years ago

Here it is. healthunlocked.com/thyroidu...

• in reply togalathea9 years ago

Thanks Galathea. I started nutri adrenal extra 7 days ago - just half a tablet for the last 6 days but nothing today as I have a fasting blood test tomorrow. Not sure it will make any difference to miss it this evening but had planned to move up to a whole tablet today so it can wait. I will check the private labs for arranging the saliva test so I can get this side of things checked too. Thanks for getting back to me on this x

• in reply togalathea9 years ago

Should I resist taking the wp thyroid when it arrives?

The temptation to self medicate to see if I can feel better is very strong.

shaws• in reply to9 years ago

We lost another great doctor with the early demise of Dr Skinner and he along with other doctors of his era diagnosed upon clinical symptoms alone and prescribed NDT. but the BTA et al always complained about him prescribing other than levo or on symptoms so he was before the GMC 7 times and exonerated each time.

excerpt:

It is important to understand Dr Skinner’s background in order to explain his position as a doctor treating patients by applying his outstanding scientific knowledge and experience to medical practice.

Dr Skinner started his career in Obstetrics and Gynaecology then moved into research publishing extensively on herpes and other viruses, vaccine development and was one of the pioneers of research into the association of viruses to cervical cancer. The Nobel Prize given to Professor Harald zur Hausen for establishing the link between human papilloma virus and cervical cancer confirmed that Dr Skinner’s basic research idea was correct albeit a different virus was responsible. Dr Skinner was admired for his fearless and exceptional intellect, independence of thought and great analytical mind.

In his capacity as a Consultant Virologist at the Queen Elizabeth Hospital in Birmingham he was referred patients who were thought to have Chronic Fatigue Syndrome, Myalgic Encephalopathy (ME) and other problems thought to be related to viral infection; he felt that a number of these people had classical signs and symptoms of hypothyroidism and treated them with thyroid replacement with encouraging results. He then started working with a number of General Practitioners to address the possibility that there may be a group of individuals who have normal thyroid chemistry but are suffering from hypothyroidism. The British Medical Journal published a letter in 1997 from Dr Skinner and a number of General Practitioners bringing this to the notice of the medical world.

Dr Skinner’s work involved a specific group of patients who have thyroid chemistry within the reference range but clinical signs and symptoms of disease; he argued that blood tests should not be pivotal in the diagnosis and treatment of hypothyroidism as they had never been validated as a marker of optimal health. Secondly, in this particular group of patients it was not known what their blood test results were when they were healthy therefore using blood tests as the only criteria for diagnosis was not sufficient.

worldthyroidregister.com/Le...

• in reply toshaws9 years ago

Thanks Shaws. A very useful piece of reading. My sole aim is to feel better. Better than am now. I feel like I'm functioning at 45% on a good day. And the good days a far and few between. It's just not good enough. It's almost been 3 years and I can get no gp to take my symptoms seriously. It so hard to sit in front of a dr who at best dismisses you, at worst, smirks while you are telling him just how awful you feel and how awful your life has become. I just want to feel better. I don't want to do anything that will put me at harm but I've reached a point where I feel my only option is to help myself. I am very close to losing my job - I can't blame them. I am literally doing about 1/3 of my job because I can't think straight. At times I can barely string a coherent sentence together and most days I am so tired I am no use to man nor beast! I was signed off work for 4 months (May-October 2015). Thats not fair on my employer or my colleagues. They deserve to get the benefit of the woman they employed and right now, that isn't me! I just want to feel better. Thank you x

shaws• in reply to9 years ago

Dr Skinner fought against the way we are now diagnosed. He said this wasn't evidence based ' i.e. only go by the TSH, the evidence was the patients symptoms. Many members self-medicate with assistance from the forum and have got much better. Even this woman (she also saw Dr S) and is now campaigning in the Scottish Parliament.

thyroidnation.com/fighting-...

Treepie• in reply toshaws9 years ago

Shaws ,the endo i first saw who was totally unhelpful made out Dr .Skinner was someone most interested in earning cash from patients!

shaws• in reply toTreepie9 years ago

Yes, treepie, the Endocrinology didn't like Dr Skinner at all. They also, along with the statement your Endo made, were the ones I assume who made the complaints to the GMC about someone who used his knowledge gained as a student to make most of his patients well.

All of the Endocrinology refused an invite by Dr Skinner to a Conference to discuss the parlous situation of many patients for whom the guidelines didn't fit. They refused one by one, the final one on the eve of the Conference.

I think this was probably due to 'conceit' (I cannot think of another word') that someone who was a Virologist and not an Endocrinologist would know more than them. (closed minds aren't open for the benefit of patients).

I saw him and liked his down-to-earth manner. No airs and graces. But I am most grateful to him for diagnosing my daughter whose other doctors dismissed her symptoms. Her husband said it was the best money he spent and they travelled from London to Birmingham.

He also helped Lorraine Cleaver who was at the 'edge' of life.

dailyrecord.co.uk/news/real...

thyroidnation.com/fighting-...

Others also found him brilliant in that 2,500 wrote to the GMC with testimonials of their diagnosis and treatment when no-one else did. Many also travelled to the GMC when there was a hearing and as always was found 'no case to answer'. All of this 'hounding' probably brought about his early demise due to a stroke.

Treepie I do sincerely hope you have found a way to get back to some reasonable good health now as I know the journey is difficult.

Treepie• in reply toshaws9 years ago

Shaws, I was doing ok on T4 but my balance ,which improved last summer , detiorated in January.I have been trying Thyroid S for a month. Two grains seemed no different , nor did three, I tried four for two days but felt very heavy and tired so back to two. However i have now three weeks extra supply of T4 which will enable me to increase in winter.

Not sure whether to continue with NDT for a few more weeks.

Saw GP yesterday about my impingement syndrome he told me it was linked to diabetes ( diagnosed months after i got the impingement syndrome) suspect also related to thyroid.

• in reply to9 years ago

You could always write a letter of complaint, copy to Practice Manager, stating that he's done nothing to help you regain your health. I find this kicks their ar*e into gear especially as when they're revalidated anything like this would be bought up.

galathea• in reply to9 years ago

I would hold off till you have checked everything...... If anything is not right then the meds wont really make you feel better... So thats, b12, d3, iron, ferritn adrenals.... If the doc wont test everything just get them done privately... You looking a a couple of hundred £ max if you deal direct with the lab..... Well worth it if it gets your life back.

Details of labs and tests here...thyroiduk.org.uk/tuk/testin...

X. G

• in reply togalathea9 years ago

Thank you. I'll know tomorrow what they intend to test for. Anything they miss out or refuse to do I will do through private testing. For me, the sooner the better 😊.

Thanks.

shaws9 years ago

Just for info:

thyroiduk.org.uk/tuk/testin...

Usually, if hypo our pulse and temps are low. This test was used before the blood tests of today to detect hyptothyroidism.

healthunlocked.com/thyroidu...

• in reply toshaws9 years ago

Thank you Shaws. I appreciate that information. I will look at best times to do this and record. I am aware should be done mornings so will investigate further. It's a useful reminder that there are other measures out there to prove or disprove my case.

9 years ago

Thank you. I have placed an order for wp thyroid and the pharmacy have advised me that it should arrive in 10 days (7 days now!). Its not something I ever thought I would have considered doing but I need to do something. I know my blood results are not as bad as they will have been for others but I also know what I am experiencing and I know the person I was before I became so ill. Lasy year my hairloss alone left me so low I only left the house to go to work. I did all my shopping online and stopped seeing friends. I have a young son and my illness has impacted on him. Anxiety, loss of confidence, draining fatigue. I know everyone on here has experienced it. My readings may not show it but I am suffering.

I don't think drs (or consultants) appreciate how hard it is to sit in front of them and almost beg for help and to get your life back.

Your profile name basically sums me up. Thank you for your response. I do appreciate it x

Musicmonkey• in reply to9 years ago

I think reallyfedup may be on to something. You say your results are ok, but to feel well we need T3 to be in the top of the range.

Have you researched Secondary, Tertiary Hypothyroidism yet? I was diagnosed in 2008 with underactive thyroid, but only recently found out that my TSH was in range then. My T4 was low in range however (so although I didn't have my T3 measured at the time it is safe to assume it was low).

T3 is the important hormone.

• in reply toMusicmonkey9 years ago

That is definitely something I will be researching over the weekend. It may be the case that my issues lie there. Either way, it's worth investigating. Thank you x

MrsMilzy9 years ago

I have the same problem diagnosed twice since 10 years old with under active thyroid. Went In with every symptom last week. Called today to get my results to be told they are normal. So booked to see the gp next week. I'm asking to be referred to a specialist as something somewhere isn't right.

I'm on my feet 5/6 days a week, have 2 boys and go to the gym 3 times a week so ur docs idea about being more active makes u better is utter b*****ks tbh lol. You no ur body and you know when ur not right

faith639 years ago

if you get on thyroid meds, with labs that look that good..i wouldn't take any thyroid meds!! No way!! you will become dependant on a pill, possibly for life, when your own thyroid may have functioned better with some help..many things effect it or it is something else, entirely. I wish i could be off thyroid meds, using my own thyroid, before it atrophies! What i would do is look into functional medicine. You have no autoimmune disease of the thyroid, which is wonderful! I have autoimmune thyroid disease and have never felt well no matter what dose or type of thyroid meds or supplement, that i take. I am swollen and my whole body hurts. My thyroid is getting very tiny from the thyroid meds..please think it over very carefully.

Musicmonkey• in reply tofaith639 years ago

Am unclear why you say labs look good faith63. The T3 is low in range. Some of us don't ever have a particularly raised TSH.

Depends on reason for underactivity. There's a minority of us who don't suffer primary hypothyroidism.

• in reply toMusicmonkey9 years ago

Hi Musicmonkey. I do think my issue is with my t3 and whether my body is 'metabolising' it (or not). Hopefully new blood results will give me something useful to work on even if it's additional supplements. The wp thyroid is ordered so at least I'll be in a position to take action if I need to. Thanks again.

faith63• in reply toMusicmonkey9 years ago

i guess mean there is hope to not have to go on medication..and no autoimmune thyroid disease, which is huge. There are many reasons for thyroid to go low, but they are treatable and temporary. Need to find the right doctor to do detective work, which is no easy task.

• in reply tofaith639 years ago

Thanks Faith. Truly, I am not taking this lightly. I have been ill for a long time and appreciate that my blood results on paper don't look as high/low as many others you will have seen posted on here. I think that's why it is so difficult for me to make a decision regarding what my next action should be. The symptoms I am experiencing are extremely debilitating and I would just like to feel that I am somewhere closer to the person I was 4 years ago (and also to regain some of my hair or at least halt the decline).

I had bloods taken again today so it will be interesting to see if the vitamins and supplements I have been taking have made any difference. Mine might be a case of gut health and my ability to absorb the supplements. Nonetheless I do feel that a low free t3 may be my main issue. If that is the case, I will have to decide what I do to manage that.

Thank you for getting back to me. I appreciate your comments.

faith63• in reply to9 years ago

Maybe you have thyroid hormone resistance. Normalish labs and debilitating symptoms. That's what Dr. Lowe treated. Here is a link..

web.archive.org/web/2010103...

he advocates treatment with ndt or t3, doesn't use t4. A functional medicine doctor would be who you see to find out why this is occurring.

faith63• in reply toMusicmonkey9 years ago

Are you referring to a Pituitary problem, then? My pit. is squished and my TSH has gotten very suppressed, in very little meds and low frees now, but i have hashimotos too. In the early days, my TSH was high and free's low..i think the damage has progressed.

Musicmonkey• in reply tofaith639 years ago

I don't have auto-immune disease as measured negative for antibodies.

However, despite an 'in range ' TSH' I was suffering from symptoms of underactive thyroid.

Despite 8 years on Levo, I don't feel any better and my blood test results show that my TSH is now low or suppressed, my T4 is high at the top of the range and my T3 remains stubbornly low.

I often feel that I am living a half life. One thing that is keeping me going is that I have been referred to an Endo who has told my GP that I am not suffering Primary Hypothyroidism and that we need to rule out a pituitary problem and has ordered more tests.

I think it's important not to fall into the trap of focusing only on the TSH and that good, knowledgeable Endo's can and do look at all possibilities.

faith63• in reply toMusicmonkey9 years ago

i have been to 4 endo's, one orders all thyroid tests and still, thinks TSH is the most important one and has left me ill! Good luck finding a good endo..and also, they do not do proper pituitary evaluations and if they find something at all, realize they are not pituitary specialists, but THINK they are, which is really scary. I am going through this right now. I have been to 40 doctors looking for help since 2009.

Musicmonkey• in reply tofaith639 years ago

Sorry to hear you haven't found the answers you need faith63.

I assume you'be tried recommended Endo's on Louise's list?

I hope you get better soon and that I get the answers I need too.

faith63• in reply toMusicmonkey9 years ago

i am in the US..thanks

• in reply tofaith639 years ago

Hi faith. I'm planning on ordering the cortisol saliva test next week and will see what results arise. I find it a sad indictment that you can see so many medical professionals (specialists) and still be without successful treatment. Although I have been ill for some years, I am very early on my journey for true diagnosis and treatment. It is very concerning to read stories like yours of years of mismanaged medical care. I hope you do find a the appropriate treatment from a knowledgeable professional. Good luck.

faith63• in reply to9 years ago

good luck to you as well..we need all the luck we can get!!

berwick19839 years ago

Have you ever been tested for a para thyroid problem

berwick19839 years ago

Have they ever checked your para-thyroids

• in reply toberwick19839 years ago

Thanks Berwick. I've never heard of it but will look into it.

fibrolinda9 years ago

get all the other tests done and put results on here. Look up hypothyroidism type 2.

Dr Mark Starr has written many articles and a couple of very interesting books on this. When blood tests are normal but you have all the symptoms it may well be that the t3 isn't getting were it should be. Though your T3 is a little low in the range anyway imho. Read, research, learn and ask questions on here then... you know your body and how you feel and you can make your own decision on whether to self-medicate or not. (I do)

and good luck

Linda

9 years ago

Thank you to everyone who has commented, offered advice and support. I really appreciate every one who has taken the time to help me and to those who have given me new areas of research to investigate - I plan to follow them all up.

I had bloods taken this morning and testing will include:

Iron

Folate

B12

Vit d3

Plus thyroid (TSH only!!!) and what was referred to as a full blood count. As soon as I get the results I will post on here for guidance.

Again. Thank you all so much for your support and help x

Musicmonkey• in reply to9 years ago

Corinbruce see my reply above. The TSH is only part of the story.

Most sufferers have auto-immune hypothyroidism and a high TSH. But not all.

You may need to get some tests done privately or at least see a GP or Endo who really understands the thyroid.

Good luck 😊

• in reply toMusicmonkey9 years ago

Thanks Musicmonkey. I know that for many it's a long road to diagnosis - especially a correct diagnosis. I may be like you, and it's not primary which I accept my blood results tell their own story. But to hear that you've been 8 years on medication that hasn't really helped worries me. I have been nearly 4 years trying to get drs to hear me and believe that I do know how I feel. To do that time again, feeling how I feel now or that continual deterioration, makes me want to pull the covers over my head and never leave the house.

I hope this is now the right road for you and that a definitive diagnosis will have you on the right meds you need to feel well. Thanks for you advice. I'll check my options with my gp when my new blood results come back.

Take care x

hw73429 years ago

It is worth bearing in mind that ranges for antibodies vary. My TPO antibodies got flagged up (by Dr Shehata miscarriage team) when they were only 18 as they believe anything above 5.6 kU/L (equal to 5.6 IU/ml) could indicate a problem, at least where auto immunity and infertility are concerned. That was back in 2013... my antibodies had gone up to 63 by Jan 2016 (although still low compared to many, but clearly out of the range you posted). Sometimes the damage shows up a little later on. I have been symptomatic for many years and unfortunately in a similar position to you atm with getting private tests etc. Good luck.

Kirst27 years ago

Gosh i am all new to this ; but i feel for you ; i am fighting too can you recommend anywhere to get Thyroid help in a private message to me please? so i can look at all options ...Good luck <3