Dismissive endo appointment and letter - tests - Thyroid UK

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Dismissive endo appointment and letter - tests

cc120 profile image
64 Replies

Saw Dr G C at UCH, who is on Louises' good endos list, but I found him impatient (kept interrupting when I tried to explain my health history) and very dismissive of possibility of inflammation causing any problems. Any advice much appreciated.

Please see LETTER at: healthunlocked.com/thyroidu...

For previous test results, please see: healthunlocked.com/thyroidu....

Please see last test above.

COULDN'T POST LETTER AND TEST ON SAME POSTING.

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cc120 profile image
cc120
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64 Replies
Heloise profile image
Heloise

Hi cc, I couldn't find the letter. What are they saying about the results that are off? Your OHD is really high. There is a level of toxicity. Have you been supplementing quite a bit? The inflammatory marker like ferritin is very high but your CRP is quite good which is puzzling. Maybe that's why he isn't as disturbed. Your DHEA is pretty low. I think it is your sed rate that is also high and means something is going on. I would look into those specific results on the internet if they won't explain. Maybe the ferritin is causing some of the other problems. It would be nice if the labs would put out information on their tests since doctors can't seem to be bothered.

cc120 profile image
cc120 in reply to Heloise

Hi Heloise, letter is at: healthunlocked.com/thyroidu...

Which is OHD? I have been supplementing to raise iron, vit b12, vit d as all were low, to ensure that I convert T4 to T3. Took vits for 2 or 3 months, mid last year, then started NDT towards end of last year. Why is my DHEA low and should I supplement? What's the sed rate?

I will research further and hope for more advice on here. Too true that GP's nor endos aren't bothered.

I have read that CRP over 3mg mine is 4mg (0-5mg) signifies inflammation which effects:

'There is a direct inverse correlation between CRP and reduced tissue T3 (112,270), so individuals with elevated CRP (greater than 3 mg/l) or other inflammatory cytokines will have a significant reduction in cellular T3 levels. The suppression of intracellular T3 levels correlates with the degree of elevation of CRP, despite serum thyroid tests being “normal” (112,270). Thus, if any inflammation is present, which is found in numerous clinical and subclinical conditions (as above), the body will have lower cellular T3 levels that are often inadequate for optimal functioning; but the pituitary will have increased levels of T3, resulting in a lowering of the TSH that would potentially be inappropriately interpreted as an indication of “normal” thyroid levels.' nahypothyroidism.org/deiodi...

Showed him this article, he was wholly uninterested and said something quickly about that refers to people with 'mumble mumble mumble'. I wish I had had him repeat it to write down.

Heloise profile image
Heloise in reply to cc120

Hi cc, I thought if your CRP was under 5, that was all right. The OHD is the vitamin D test and I see they add your D2 to D3 to come up with that number. They seem to take that lightly but I know D can be toxic at certain levels and you really don't want to be over.

Many people were taking DHEA when I first started reading the forum and I tried it since I thought it would help raise my thyroid levels which are quite low. But decided pregnenalone might be a safer way to go. It's difficult when you are doing things on your own. Since then, I have gone on to T3 only.

Yes the pituitary needs mostly T3.

So you just began NDT less than three months ago and already you are at 200......is that 3 1/2 grains almost?

cc120 profile image
cc120 in reply to Heloise

Hi Heloise, I think started NDT around Sept, on Naturethroid (now Thiroyd as cheaper) at 15mg for 2 weeks, and continued to raise fortnightly till reached 180mg. Asked for FT3 test from GP and she said lab won't do it, so continued to increase as felt that as T4 had increased from 12 to 21, I wasn't feeling any better, so suspected not converting T4 to T3, so increased to 240mg (4 grains). When I finally (at endo appt) got a FT3 reading of 8.3 (4 to 6.8), reduced back down to 180mg (3 grains) and am feeling better. Have find that I feel worse if too much sugar so cutting down or out.

I have been applying natural progesterone cream 20mg a day for a month but now just now and then. They've never tested my hormone levels.

My adrenaline and cortisol are definitely too high or too low, alternatively and taking Seriphos to help control excess stress/cortisol.

Heloise profile image
Heloise in reply to cc120

cc, do you think you are at full capacity of your hormone? At the bottom of this page, notice where he says at week 11 you are just feeling the affects of the new dose at week 6.

thyrophoenix.com/adjusting_...

cc120 profile image
cc120 in reply to Heloise

Yes, that's also very true, might take more time to adjust inside.

Heloise profile image
Heloise in reply to cc120

You did go way over range so I'm glad you cut back. Many people here post FT3 as 4.8 or lower. I'm still thinking you may find yourself feeling hyper even though cutting back. But your adrenals don't seem to be interfering with your increases so it seems as if you are heading in the right direction.

cc120 profile image
cc120 in reply to Heloise

Thank you Heloise, someone pointed out low white cell which mean low antibodies and low iron saturation percentage.

Heloise profile image
Heloise in reply to cc120

youtube.com/watch?v=FvsqQWU...

Cytokines

cc120 profile image
cc120 in reply to Heloise

Thank you, good article on cytokines:

news-medical.net/health/Cyt...

Heloise profile image
Heloise in reply to cc120

Isn't your C Reactive Protein 2.6?

cc120 profile image
cc120 in reply to Heloise

That's true, just saw this now as you pointed it out, but approx month ago had a CRP test at 4mg (0-5mg). Why did it go down so quickly? Or why was it so high then?

Heloise profile image
Heloise in reply to cc120

Were these tests done after you started taking the naturethroid?

When it comes to blood testing, there may be fluctuations just like there are with T4 and T3 but then I had a set of labs from 20 years ago and many of the results were very close to the ones I took last year. I was surprised at that.

cc120 profile image
cc120 in reply to Heloise

Hi Heloise, both test were done when I was on NDT, first one by GP lab, second by UCH hospital lab. Approx a month apart.

Samra83 profile image
Samra83

Hi...

Sounds adrenal to me.... I recently worked out that sugar cravings are a good indicator. Yes, cut out sugar, and all refined carbohydrates, and gluten, avoid fruit and esp bananas, eat lots of raw veg, and drink liquorice tea ( and perhaps add pregnenolene and b5). ya void large meals, eat small and often to regulate blood sugar levels. This has good effects almost immediately.

Good luck!

s

cc120 profile image
cc120 in reply to Samra83

Thank you Samra83, seems like good advice. Just started taking adrenergize (last year took nutri adrenal extra for a few months). Would you recommend these to help support the adrenal?

Jackie profile image
Jackie

Hi White cell results is low antibodies.Red cell is iron not ferritin. Separate test for iron with transference % which is the absorption.That is a puzzle as iron not so bad but it is not stored in body as then it becomes ferritin which is oK.Otherwise not too bad.

Sorry not much help there, they ,look OK to me mainly.

Jackie

cc120 profile image
cc120 in reply to Jackie

Hi Jackie, thank you, when you say white cell low antibodies, do you mean when white cell is low there might be antibodies present? Interesting that red cell indicates iron levels. Is the iron binding saturation, the transference % that is the absorption? Mine is 20 (15-50) is that OK?

Jackie profile image
Jackie

Hi It means there is few antibodies present so liable to infection.

Absorption of iron should be much higher especially with thyroid disease. nearer 100%, so needs to be higher.

Jackie

cc120 profile image
cc120 in reply to Jackie

Thank you Jackie. Low white cells means low antibodies, is there anything I can do about this? What is there that can be done about increasing absorption of iron?

Jackie profile image
Jackie

Hi I do not know of anything you can do to increase the antibodies, maybe multi vit and minerals might help? Iron supplements with care as ferritin is too high, ask GP. Certainly food containing iron and if taking supplements with 50mg vit C. My Endo wanted me to have an I.V for iron but lower than yours and my Ferritin is also good.

Jackie

cc120 profile image
cc120 in reply to Jackie

All GP said was decrease iron supplement as ferritin too high, didn't mention iron low, or iron saturation low, or white cells low. She then panicked about suppressed TSH and referred me to endo, who was as much use as a chocolate teapot.

PS what effect does low iron saturation have?

Heloise profile image
Heloise in reply to cc120

CC, you can compare your numbers with these from Stop the Thyroid Madness regarding iron:

Ferritin (ug/L) <12 Iron deficient (Information above still applies for Canadian Ferritin levels)

12-30 Depleted iron stores

31-79 Reduced iron stores

30-300 Normal iron stores

>300 Likely iron overload

Iron (umol/L) 9-30 Normal range ( we see optimal results in the mid-20’s for women, closer to the top for men)

TIBC (Total iron binding capacity): measures whether a protein called transferrin, produced by the liver, has the ability to carry iron in the blood. Used to determine anemia or low body iron. If your result is high, and in the absence of chronic disease, you may be anemic. With healthy amounts of iron, this test will be low in the range—about 1/4th above the bottom number.

TIBC (umol/L) 45-77 Normal range (low 60’s is noted when iron is looking good)

Saturation 0.20-0.50 Normal range (close to .35 for women, higher for men, is noted when someone is optimal)

B12 (pmol/L) <148 Deficiency 148-220 Insufficiency >220 Sufficiency

Note: 60% of patients have a hematologic or neurologic response to B12 supplementation at a level <148 pmol/L

TIBC (Total iron binding capacity): measures whether a protein called transferrin, produced by the liver, has the ability to carry iron in the blood. Used to determine anemia or low body iron. If your result is high, and in the absence of chronic disease, you may be anemic. With healthy amounts of iron, this test will be low in the range—about 1/4th above the bottom number.

cc120 profile image
cc120 in reply to Heloise

Thank you Heloise, so should the GP / Endo be concerned about my iron and TIBC levels?

Jackie profile image
Jackie in reply to cc120

HI It can affect your breathing but mainly tiredness.

Jackie

cc120 profile image
cc120 in reply to Jackie

Hi Jackie, thank you, did you say that this is the area of an endocrinologist and would you say that he should have explored my iron and TIBC levels?

cc120 profile image
cc120 in reply to Jackie

Hi Jackie, so would an IV increase 'iron' levels but not ferritin?

Jackie profile image
Jackie

HI I may be wrong but I think the ferritin is the store iron and low iron causes the tiredness etc.It is a pity as I know the iron/ferritin is endo. Mine is very unhappy with the iron result for me. I can only suggest some searches but i know in my experience it is quite complicated.The antibodies you need to build up your immune system, why I suggested multivit and minerals, especially minerals.

Sorry not much help.

Jackie

cc120 profile image
cc120 in reply to Jackie

I don't know if he didn't notice or didn't care about low iron, had taken on the impression that I was obsessed with my health and blood test result figures. I have prepared meticulously as I knew I wouldn't be feeling well or confident and listed the health history. As I tried to read it to him, he kept asking when I started NDT, so couldn't pain the full picture for him and he jumped to conclusions. I hoped that by leaving the info with him, he would then understand, but probably didn't even bother to read through it. However, does he letter suggest that he accepts I am hypothyroid?

Jackie profile image
Jackie in reply to cc120

HI I cannot find the last post to me. However, the Endo should have thought of these. I know my Endo is very particular about iron and ferritin., and often disagrees with the GP on levels.

Jackie

cc120 profile image
cc120 in reply to Jackie

Thank you Jackie, according to Louise this endo shouldn't have been on the recommended list as she has had previous complaint about him, she's now 'struck' him off. Will send letter pointing out inaccuracies, copy to GP, and later will see if I can get her to refer me to another recommended endo.

Jackie profile image
Jackie in reply to cc120

Good idea.

Jackie

cc120 profile image
cc120 in reply to Jackie

Thank you Jackie.

Jackie profile image
Jackie in reply to cc120

I am niot sure but your iron is not so low that you need i.V. I should have had one but my iron is 8 and transference very low.MY ferritin is OK.

I cannot find your question on here, they keep disappearing!

Jackie

cc120 profile image
cc120 in reply to Jackie

Hi Jackie, with my given iron and ferritin levels and symptom of tiredness, would a helpful, conscientious endo helped me with these? Or explored further?

If not IV to help me as iron not low enough, what other solutions can endo offer?

cc120 profile image
cc120 in reply to cc120

this might be the one you were looking for?

Heloise profile image
Heloise

cc, maybe this will help with some of your other lab results:

drkaslow.com/html/blood_cel...

cc120 profile image
cc120 in reply to Heloise

Thank you Heloise, I will study this.

cc120 profile image
cc120

I wonder if I should write to endo pointing out his incorrect assumptions?

Heloise profile image
Heloise in reply to cc120

cc, No, I don't think it would be wise. Unless you have a medical degree, you won't have credibility. They attacked brilliant doctors like Dr. Skinner for the same sort of thing.

I would stay on the good side so that you can get what you need otherwise you will be spending your own money. You have to be realistic about expectations, cc. I don't think these GPs who may see 50 or 60 patients and then expect on their own time will sit down and review the findings. That's why we try to help each other here. I keep trying to learn myself as I know that my doctor doesn't even know enough to help me. Just go on learning and trying to get well.

cc120 profile image
cc120 in reply to Heloise

You make a good point Heloise, mind you wouldn't mind pointing out that he incorrectly thought I was on thyroxine for 10 years, when in fact only been on for a few months, because he wouldn't listen to me.

But in any case, as I haven't officially been diagnosed as Hypothyroid up to now, do you think his letter, suggests he considers me hypothyroid?: healthunlocked.com/thyroidu... - if so, one in the eye for the GP who hadn't helped me for 10 years.

Heloise profile image
Heloise in reply to cc120

cc, I don't blame you for your feelings. Honestly, you should hear my stories re doctors. Now I keep my distance whenever I can....they can be dangerous.

To your question, the letter above is from your GP to the Endo? Is that correct? Do you notice it says at the top you were diagnosed hypothyroid in 2004 and I suppose that is why he thought you had been treated for ten years. Well, I think you could offer the correction for those two points because now you are being referred to the other practice and they will be misled if they receive wrong information. I think that would be fine to say you would like them to make those corrections on previous reports. I would make two copies and ask them to make the corrections and send to each one.

You are doing so well on NDT in spite of the iron. It must not be serious enough to cause conversion problems. I wouldn't worry about it.

cc120 profile image
cc120 in reply to Heloise

The stories about GP's are rife, but thought I would be on a safe tract when I got to see an endo on the good nhs endo list of Louise's. They tried to book me with Dr S H, who has some terrible feedback on here, but after kicking up a fuss, was transferred to Dr G C. So thought everything would be plain sailing from that point.

On the lab blood test results for 2004, my TSH is normal, so don't know what he is talking about, but in 2007, TSH is 7.5 (.3-4.2) lab states 'borderline, repeat in 3 to 6 months. I was only aware of this when I asked for 10 year blood test results print out, last year. Following years TSH went up and down, though I never felt any differently and wonder if the low readings were a mix-up as for the last TSH reading of 8.1, lab refused to test as tested within last 6 weeks, was last tested a year ago. So GP had to sort out before they tested.

So all very confusing if he's saying diagnosed 2004. But is he saying I AM now hypothyroid?

Next practice as in intergrated? I will take along my results.

Heloise profile image
Heloise in reply to cc120

cc, I think you are blazing a trail here for others so I hope your are successful. In the upper corner, why does it state hypothyroid 2004. It does look like the date of a diagnosis to me. What is the date of all the tests you just posted? Are they recent?

What exactly are you hoping for? Are you hoping for a prescription for what you are taking now? NDT Are you hoping they will monitor your treatment?

cc120 profile image
cc120 in reply to Heloise

Hi Heloise, not blazing a very bright trail, if the endo who was helpful to others previously, hasn't been to me.

Results posted were taken in last month. I have others for Sept 2014, and Jan 2014, on the forum.

Well I must admit, firstly I thought the FT3 reading would prove I wasn't converting. So wanted T3 prescription.

But when clear was converting, wanted him to found out why I'm still so tired, etc. And also to monitor.

The other thing he said is that he can't prescribe T3 or NDT, but only suggest to GP to prescribe.

He's under the impression I'm on Naturethroid, but told him and in info I left him, changed to Thiroyd as much cheaper.

Heloise profile image
Heloise in reply to cc120

I'm on T3 and my P.A. says she knows nothing about it. They really don't like it. I think you are in the same boat but I do think in time you are going to get through this feeling pretty well and then you won't have to put him with this kind of passive abuse. Keep us posted.

cc120 profile image
cc120 in reply to Heloise

I certainly hope so, I just wonder if they only help people they like?!!? Passive abuse is so right!

What's PA?

He kept saying (before we looked at T3 reading) that T3 is in NDT, I said only a small percentage. But he couldn't understand why that wouldn't be enough. If not converting wouldn't be enough. We then looked at T3 reading. You would have thought he would have done that the other way around, sheeesh!

Heloise profile image
Heloise in reply to cc120

cc, I've been at TUK for two years or more and read all the horror stories. The God complex seems to reign supreme. I don't think the NHS even follows their own rules and somes rules they state don't exist..... at least from the experiences I've read. Rather than fight the system, I think trying to use it to your advantage, if you can, is a better strategy. If you can get well in spite of them, why waste energy plus the added stress seeking the justice I don't think will ever be there. I used to mention having a class action suit against some of the doctors when I read about the mistreatment here but I've come to my senses and faced reality. Thank goodness we have the other options.

P.A. is a physician's assistant.

cc120 profile image
cc120 in reply to Heloise

Hi Heloise, I did come to that same conclusion when I decided to self-medicate, much to the chagrin of my GP when I later told her when I felt I needed further support, ie blood tests. When she saw my TSH was suppressed, and that I threatened to start taking T3 if FT3 wasn't tested, she panicked and referred me to the endo. She wasn't the GP who ignored my symptoms and TSH readings for over 7 years but a new one I started with end of last year.

Well I will persevere with the help of the kind fold on here and will keep you posted. Thank you for all your time and help. xx

Heloise profile image
Heloise

cc, me again. I never noticed that there might be a European range used for iron at the bottom of the Optimal Lab Results link I gave you from STTM. I don't know which ones apply to your results.:

CANADIAN LABS AND RANGES:

Ferritin (ug/L) <12 Iron deficient (Information above still applies for Canadian Ferritin levels)

12-30 Depleted iron stores

31-79 Reduced iron stores

30-300 Normal iron stores

>300 Likely iron overload

Iron (umol/L) 9-30 Normal range ( we see optimal results in the mid-20’s for women, closer to the top for men)

TIBC (umol/L) 45-77 Normal range (low 60’s is noted when iron is looking good)

Saturation 0.20-0.50 Normal range (close to .35 for women, higher for men, is noted when someone is optimal)

B12 (pmol/L) <148 Deficiency 148-220 Insufficiency >220 Sufficiency

Note: 60% of patients have a hematologic or neurologic response to B12 supplementation at a level <148 pmol/L

cc120 profile image
cc120 in reply to Heloise

The ranges you post here, relate to mine in the UK but I can't see a European link. Is the drkaslow.com/html/blood... for European?

Heloise profile image
Heloise in reply to cc120

It's at the very bottom of this, cc.

stopthethyroidmadness.com/l...

cc120 profile image
cc120 in reply to Heloise

Hi Heloise, I can see the Canadian ranges at the bottom, nothing else further down, I wouldn't be surprised if I'm misunderstanding what you are asking, wouldn't be the first time : )

Heloise profile image
Heloise in reply to cc120

No, you've got it. I think they mention European up above so you'll be sure to look down. Just keep in mind that suggested levels for all those iron labs may not be correct with your test results. I thought Canada might have the same standards as the UK. I think STTM uses U.S. standards.

Be well.

cc120 profile image
cc120 in reply to Heloise

Thank you Heloise, I will bare this in mind. I have an update re: Dr G C, just waiting on permission to up date thread. But have decided to write a letter pointing out his inaccuracies and copy to GP.

cc120 profile image
cc120

Louise has now removed Dr G C from her recommended endo's list as she has also had previous poor feedback on this endo.

cc120 profile image
cc120 in reply to cc120

Clarification from Louise: ' Thyroid UK do not recommend any docs ever.

We can't. None of the staff at Thyroid UK have personal experience of any of the docs.

Also, as not everyone has the same health situation, they may not have the same experience with a doc.

So, both the Endo list and the list of private GPs are sent simply as ideas for docs people can try as we have heard they have helped people in the past. They are not 'Thyroid UK approved'. '

Jackie profile image
Jackie

Yes. low iron causes severe tiredness and diabetes does too.

Jackie

cc120 profile image
cc120 in reply to Jackie

As a result of my HBac1 (or whatever it is) test, said that I should just improve my diet, could she have offered other help?

Jackie profile image
Jackie in reply to cc120

Hi That is the diabetes test. All Endo, she would put you,at least on maximum iron from GP, it needs vit C taken with it, 50mg.Is the diabetes test out of range?it is the most important test for diabetes and should be in range unless diagnosed and being treated.

Jackie

cc120 profile image
cc120 in reply to Jackie

I was on self medicated iron supplement, but iron levels decreased from 15 to 12 (6 - 26) and ferritin rose from 36 to 293 (13-150).

HbA1c (DCCT aligned): 5.3% (4-6%)

HbA1c (IFCC standardised): 34 mmol/mol (20-42)

Jackie profile image
Jackie in reply to cc120

Hi I think the diabetes is just in range, not sure what the iron means as only going by myself and my endo. I do think the ferritin is the storing of the iron. You really need advice from a general endo.I have to take the maximum iron supplement from the gP and it does little to help.

Jackie

cc120 profile image
cc120 in reply to Jackie

Thank you Jackie.

cc120 profile image
cc120

Hi Londinium, I did write that letter to the endo, a copy to my GP but didn't send to the UCLH complaints dept, as it was an exercise to highlight his errors and flippancy to my GP, so that she might authorise relevant tests and refer me to another endo.

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