Please can someone help with my daughter's symptoms - doctors this afternoon.

[Katkin1]

A while ago I asked the question below. I am taking my daughter (33) to the doctor late this afternoon because she has been 3 times on her own and has been told there is nothing wrong with her. For 5 weeks she has had a swollen tongue (doctor gave her mouth wash) and is now feeling dizzy. Her hair loss (pubic) is in 3 very large patches and is getting worse). She has all the symptoms of hypothyroidism (fibromyalgia - been confirmed by doctor, extreme tiredness, but the doctor says her results are normal, feels cold all the time etcl. Could it be thyroid or something else? I am going with her because she has been 3 times before and told there is nothing wrong with her apart from depression - tablets don't seem to help much. She has extremely vivid frightening dreams every night and also has a bad headache every single day.

Can anyone help me to know what to say at 4.30pm to the doctor please?

This is what I posted before:

I have hashimoto's. My daughter (aged 33 and just had a baby 7 months ago) has just had a very thorough blood test done by the doctor (as she has felt unwell for some time) and I post some of the results below. I would be very grateful if someone could look at these for us please, and let me know what you think (the doctor has put that they are all normal):

TSH 1.06 mU/L (0.35-5.50 mU/L)

Free T4 12.0 pmol/L (10.50 -20.00 pmol/L)

Free T3 4.6 pmol/L (3.50 - 6.50 pmol/L)

Thyroid Peroxidase 35 iu/ml (<60)

Plasma glucose 4.0 mmol/L (3.00 - 5.50 mmol/L)

Plasma creatinine level 53 umol/L (54.00 - 145.00 umol/L)

Plasma potassium level 3.7 mmol/L (3.50-5.00 mmol/L)

Serum iron 13.9 micromol/L (11.00 - 30.00 micromol/L)

Serum folate 10.1 microg/L (3.00 - 20.00 microg/L

Serum ferritin 42.6 microg/L (10.00 - 200 microg/L)

Serum vitamin B12 372 ng/L (180.00 - 900.00 ng/L)

Vitamin D 44 (33-79 insufficiency)

Do these look 'normal' ? The doctor has gone down the route of antidepressants at the moment and my daughter also has other symptoms such as fibromyalgia, extreme tiredness and lack of co-ordination, hair loss. The doctor has told my daughter that she would not treat her for hypothyroidism until her TSH was 6 or over!

Please can anyone help?

[Moggie]

I think that I said before that her VitD, B12 and iron are low and any/all of these can be causing a lot of the problems. Maybe talk to the GP about these.

Moggie x

[Katkin1 in reply to Moggie]

Thanks Moggie.

The Doctor did not seem concerned about the low levels of vit D, B12 and iron but my daughter is now taking supplements. I will check to see if she is taking enough.

I went into the doctor with my daughter but I kept quiet in the room until my daughter asked me to join in as she couldn't remember what she had written on the piece of paper she had left at home!. I said as little as possible and waited for the doctor to draw some conclusions. However, in the end she asked me had I got any thoughts. I said that as she didn't think it was thyroid, could it be something else such as a hormone problem after the birth of the baby or even a pituitary problem.

The doctor agreed that the hair loss (she called it alopecia) could be connected to thyroid and even gave my daughter some information on it. The doctor said the hair loss and other symptoms definitely warranted further investigation (although it is easy to pigeon hole people when there is no answer to the problem!).

The doctor has agreed that further blood tests are required and has agreed to email the NHS endo to find out his/her thoughts, as, she said, it will be quicker than waiting for an appointment. The endo will then, hopefully, advise on what blood tests need to be done.

A result (I think)!

Best wishes

Kathy

[Hashi_since_age9-1988]

In my opinion her T4 level is too low. Secondary hypothyroidism/pituitary problem?

[PinkNinja in reply to Hashi_since_age9-1988]

Agreed. Her T3 is also too low in the range. Her TSH could be lower than is representative of her thyroid function because of her lowish B12 or low cortisol levels.

I also agree with Moggie about the ferritin, iron and vitamin D

[merissa]

She does seem to have hypothyroidism regardless of her TSH her symptoms alone suggest this, I agree with Moggy iron should be over 50, b12 over 500 cant remember range for vitamin D but it does suggest its low. have a look at iron without anemia, google it.

hope this helps. x

[Katkin1 in reply to merissa]

Thanks for your reply Merissa. I will check what level of supplements my daughter is taking. She has only just started these and we are not quite sure what amount of vitamin D, B12 and iron she should be taking as the doctor thought she only needed 100 iu of vitamin D and none of the others. However, she is supplementing some.

I have replied more fully above to moggie.

Best wishes

[merissa in reply to Katkin1]

Hi again, had to reply, please try and pay a little extra for organic vitamins, I take jarrows b12 and spatone for iron. in terms of your daughters normal results it seems the blood test she has needed hasnt been implemented, let me explain she could have hashimotos D which autoimmune, therfore her results could be normal even the antibodies, this happened to me until I had thyrglobulin antibodies tested which was high and a indicator of Hashi. Looking back on your fist post, Alopecia is autoimmune related. The Endo may well reject the diagnoses because the TSH is normal, however you need to insist that her smptoms seem to shout hypothyroism, ask what the criteria is for hypothyroism and it should be, weight gain/ loss/ hair loss/ fatigued/ and bowel issues. loosing pubic hair is another symptom, then you respond exactly!!!!!

hope this helps x

[Katkin1 in reply to merissa]

Hi Merissa. She did have Thyroid peroxidase antibody level done in April and it was 35 iU/ml (<60) but was told this was normal. The doctor admitted that Alopecia is an autoimmune disease. She also has loss of pigment under one arm and a small patch on her arm, which I understand could also be autoimmune related.

What is hashimotos D please?

Best wishes

Kathy

[Moggie in reply to Katkin1]

Hi Katkin,

On both the B12 and VitD 1,000iu daily is a maintenance dose - in other words it will maintain her levels were they are, although saying that I supplemented 1,000iu Jarrows B12 for 6 months and my levels went fro 290 to 598 so maybe 1,000iu B12 is o.k.

Regarding her VitD, she should be taking, at least, 2,000iu daily possibly 3,000iu daily to get her levels over 75.

I take iron tablets at the moment, prescribed by endo, and they are quite strong so I don't know about shop bought iron supplements but you should be aiming for a level of 90.

Here is a link to the B12 that most on here use - it dissolves in the mouth so that if you have gut/absorption problems then it still works well

amazon.co.uk/Jarrow-Formula...

Moggie x

[rossilin600]

Hi, did your daughter have any problems with childbirth, ie any heammoraghing , she needs to be looked at by specialist as doctors have no idea of any more serious underlying probs with thyroid, I have had many full blood tests that doctor said was normal for years but that could not have picked up my final diagnosis that needed more specialised diagnostics, please do not let the doctor let your daughter suffer years of poor health leading to much more serious implications, good luck

[Katkin1 in reply to rossilin600]

Hi rosslin

My daughter did have problems with childbirth! She had been home from hospital two weeks when suddenly she started heammoraghing and was rushed back into hospital and put on a drip and antibiotics. The heavy bleeding stopped after about 12 hours and she was then sent home. I don't mean to pry but can you let me have any more information on what to look for please, or what it might mean? She is also rhesus negative and had to have an injection after the birth.

Best wishes

Kathy

[rossilin600 in reply to Katkin1]

Hi katkin, I really do not want to scare you as many women are diagnosed with thyroid probs after childbirth like I did but I have only last year found out after suffering many years about empty sella syndrone (sheehans) which causes damage to the pituritary gland after heammoraghing, they only discovered mine after a mri scan last year and although symptons can take many years to develop I now have hypopituritism, just wish they had tested my pitutity all those years ago it would have saved much heartache and chronic illness, just want thyroid people to know of this relatively rare condition so they can push for tests. Hope your daughter gets well soon and congrats on new grandchild.

[Katkin1 in reply to rossilin600]

Hi rosslin. I will certainly keep this info in mind. I mentioned pituitary to the doctor. Can they tell if you have sheehans from a blood test please?

Best wishes

Kathy

[rossilin600 in reply to Katkin1]

I think it can only be seen on mri scan, thats how they did mine anyway just food for thought, good luck

[rossilin600 in reply to rossilin600]

Sorry not very clear, having a dementia day, I mean the empty sellar will be via mri but any hormone deficiencies ie: cortisol, thyroid, growth hormone etc can be diagnosed via blood results but normally read by endo rather than GP who is not specialised in this area at all.

[merissa]

Katkin, hashimotos is autoimmune d, this is where your tsh and antibodies fluctuate, from hyper to hypo. Leaving consultants confused. It is not thyroid but autoimmune which again antibodies attack the immune system, eventually the patient will become hyperthyroid. The patient is then given thyroid meds which do not work, because it's autoimmune, therefore the immune system needs sorting out. Antibodies like tpo tg and tsi are strong indicators, that hashimotos is present, even one of these out of kilt, will help with the diagnoses. Will try pm u later as got a horse to feed and rushing. X

[Katkin1 in reply to merissa]

Thanks Merissa. Look forward to your pm.

Kathyx

[tegz]

Never forgoet Dr D-P's strictures on the Adrenals.

If they're not right -even correct treatment for UAT is wasted.

A 24 hr cortisol test is hardly expensive, or difficult to arrange, and would be a good test to get done.

[Katkin1 in reply to tegz]

Thanks tegz. Funnily enough, my daughter was back at the doctors this morning in extreme pain with a fibromyalgia flare up and she couldn't lift the baby (I have been with her all day). The doctor has arranged for her to have a cortisol test done at 8.50 on Friday morning, as well as tests for inflammation. Do you know if these need to be fasting please?

Best wishes

Kathy

[tegz]

That's good news- I wonder if s/he reads this site

On the fasting bit- I don't think so- it's normally stressed to do it when needed,anyway.

I gather it's best to rest for half an hour pre the test to give a steady reading which I understand should be high early in the day [like>400] & falling later -but this is something for your GP to advise on.

There are other tests to get a better picture than the early am test- but it's a good start and easily done with the other blood samples.

The inflammation tests are long term markers for other thyroid imbalance checking -so long as they're in the low normal, that should be reassuring.

[Katkin1 in reply to tegz]

Thanks for your help tegz,

Best wishes

Kathy

[merissa]

Hi again, will try later to pm you, my kindle wouldn't post. Fybro, is really thyroid, or a injury that has not been investigated properly in my opinion. X

[Katkin1]

The test results are now in for my daughter but she cannot get an appointment to have a phone conversation with the doctor until Friday. She has asked for a copy of her test results today, but has been told she cannot have them until the doctor has spoken to her.

Can the doctor refuse to let her have her results until she has discussed them with her on Friday please does anyone know? She wants to discuss her hormone levels and bone profile. What could this mean please, as she is worried?

Best wishes

Kathy