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Avatar universal

Pulling my hair out (and it's falling out) with frustration! Please help!

Hi there, for 6 months now I have battled extreme hypothyroid symptoms.

Cold hands and feet
Chronic Fatigue
Weak legs
Inability to concentrate on anything, books are complelety out of the question
Sluggish
General weakness
Dizziness and two fainting episodes
Waking up feeling knackered
Oversleeping
Weight gain (all in my lower abdominal area)
Can't lose any weight
Intolerance to Cold
Abdominal Distension
Heart Palpitations
Constipation
Shortness of breath
Heart occasionally skipping beats

My GP gave me a blood test and my results were TSH 1.7. Free T4 7.5.
I was given Levothyroxine 50mg but my symptoms only got worse and I was advised to stop taking. I requested to have my T3 tested. These results came back as TSH 1.57. Free T4 8.2. Free T3 3.9

Week after week my symptoms are getting worse. I cannot be on my feet for even an hour.

I saw my Endo today and I feel completely belittled. I actually burst into tears from frustration. After a retest two days prior to the appointment my levels came back TSH 2.21. Free T4 10.2.

He says he will not treat me for anything, and that I am not hypothyroid. Please tell me what I am missing here, is he correct? I haven't been 'myself' in six months now and I feel at a loss what to do. I tried to explain the previous tests were taken at 3.30pm and the most recent was at 10am, and maybe that explains that difference? But still, he shut me down. I have suffered with anorexia which I am now recovering from, and feel like he has put me under the umbrella and stigma of my past. I have never experienced these symptoms in my life, not even when I was severely underweight.

What do I do now? I can't live like this.
8 Responses
Avatar universal
What were the reference ranges shown on the lab report for the Free T4 and Free T3 results?

You have a lot of hypo symptoms, but the doctor is just following the dictates of the NHS which relies predominantly on TSH and Reference Range Endocrinology.  Predominantly that results in misdiagnosis or inadequate medication if diagnosed hypothyroid.  

A good thyroid doctor will treat a hypothyroid patient clinically by testing and adjusting Free T4 and Free T3 as necessary to relieve symptoms without being influenced by resultant TSH levels.  Symptom relief should be all important, not just test results.  So your options will be to use the info in the following link to try and influence your doctor (GP) to treat clinically as described, or find another doctor that will treat clinically as described, or go private.

http://www.thyroiduk.org.uk/tuk/TUK_PDFs/diagnosis_and_treatment_of_hypothyroidism_issue_1.pdf  (The link seems to be having problems today, so check later.)
1 Comments
The reference ranges were
Free T4: 8.4 - 19.1
Free T3 - 3.9 - 6.0
Avatar universal
So your first test results from the GP were FT4 8.2, which is actually below range, and your Free T3 at 3.9 was at the very bottom of a range that is too broad anyway, and your doctor did nothing, likely because your TSH was in range.  In view of all the hypo symptoms you have, that is ridiculous.  

Then the Endo tested for TSH and it was in range, and also tested for Free T4 which was also in range, but only at 17% of the range which is too broad due to the erroneous assumptions used to establish ranges.  If you told the Endo about all the symptoms you have and he refused to treat you, that is typical of the NHS dictates, but terrible for patients.  No wonder there is so much undiagnosed and undertreated hypothyroidism in the UK.  

So when the link I gave you is available again, please read at least the first two pages and more if you want to get into the discussion and scientific evidence supporting all that is recommended in the paper.  Then you can consider the 3 options I mentioned above and see where that leads.  

Also, I haven't mentioned that hypothyroid patients are frequently deficient in Vitamin D, B12 and ferritin.   If not tested for those you should do so and then supplement as needed to optimize.  D should be at least 50, B12 in the upper end of its range, and ferritin should be at least 70, and some sources say 100.

Please keep us posted on your progress.  We'll be happy to help any way we can.  
1 Comments
Thank you so much for being incredibly helpful and giving your advice. Honestly, I've been so tearful this evening because I feel like there's just no hope and no one is listening. The GP has no extensive knowledge and the Endo said he will be sending a letter back to the GP saying he will not be seeing me again. So do I pay the £200 for a private consultation now? I don't know what to do. What if I pay £200 only to be told the same thing? Hopefully the link works soon and I'll read that straight away!
Avatar universal
Obviously the Endo is a waste of further time anyway, so no loss there.  Before spending the money I would first read the link and then make a copy of this link on the most typical symptoms of hypothyroidism, and circle all the  ones you have.   Then take a copy of that and the complete paper on Diagnosing and Treating Hypothyroidism to the GP and tell him that your symptoms and very low levels of Free T4 and Free T3 clearly show you are hypothyroid.  Tell the GP that if he reads the paper he can see that hypothyroidism needs to be treated clinically by testing and adjusting Free T4 and Free T3 as needed to relieve symptoms.  Then ask him to consider such clinical treatment for you.  If he will read the paper there is nothing there he can refute because there is more than adequate scientific evidence supporting everything in the paper.  If that doesn't work then you will have to spend the money to go private.  I know that is expensive, but it will be worth it for you to get your health back.  Depending on where you are located, I may know of a doctor that is recommended as a good thyroid doctor.

1 Comments
Thank you, I will do exactly that. The link is still down at the moment, unfortunately. I'll book a GP appointment in the morning and hope the link is up again by then.

I'm located in Southend, Essex - would that be nearby?
Avatar universal
I meant to also ask, what could the GP prescribe me? I did ask for T3 when the Levothyroxine worsened my symptoms but he refused, saying it wasn't licensed.
Avatar universal
Sorry I forgot to give you the link that lists 26 typical hypothyroid symptoms.  It would be a good idea to mark the ones you have and take it to the GP appointment.

http://endocrine-system.emedtv.com/hypothyroidism/hypothyroidism-symptoms-and-signs.html

The doctors that I know of are all in the London area or farther west.  One thing to keep in mind is the advice given us from a UK member with hypothyroidism, who finally was able to get the help she needed.  This is what she told us.  "What I have learned from my experience is that you have to go to the Dr's office and TELL THEM WHAT YOU WANT and to go backed up with knowledge.  You have to tell them that you have done your reading and looked into your condition and care about the long-term treatment of your health and thyroid.  If you fight for what you want, you will eventually find someone that is happy to go along with your wishes.  But we all have to take charge of our own health, right?"

So, read the paper, and mark up the list of symptoms, and take copies of both to the doctor and tell him that it is very clear that you have central hypothyroidism and need thyroid medication adequate to relieve all those hypothyroid symptoms.  In other words, clinical treatment.  I would also ask for both T4 and T3, since so often thyroid patients do not adequately convert T4 medication to T3.   It is my understanding that the NHS was taking steps to cut costs by not approving new prescriptions for T3, but allowing continuation of existing use.  I don't know if this means that doctors will write prescriptions for T3 if the patient pays, or not.  Something to check out.  
Avatar universal
Hi there, just an update, as I'm really quite frustrated and at a loss what to do.

I paid £200 to see a private endo, only to be told I am definitely not Hypo and my symptoms are not down to this. I could've screamed. I asked to be treated clinically for symptom relief and he still refused.

I took it into my own hands recently to purchase 1 grain Nature-throid and took this for a week, before then needing fresh blood results for my Endo appointment. I was open and explained this to him.

My last full blood count and thyroid results were:

Pathology Investigations:

Serum vitamin B12 level 475 ng/L [150.0 - 900.0]
B12 stores normal. Stores adequate for
at least 2 years. If patient is on B12 therapy it
is not necessary to monitor B12 levels

Serum cholesterol level 3.3 mmol/L

Serum C reactive protein level < 1 mg/L [0.0 - 5.0]

FULL BLOOD COUNT
Haemoglobin concentration 116 g/L [115.0 - 165.0]
Total white blood count 4.4 10*9/L [4.0 - 11.0]
Platelet count - observation 231 10*9/L [150.0 - 400.0]
Haematocrit 0.34 L [0.37 - 0.46]
Below low reference limit
Please note change in FBC method from 27/09/16.
No significant differences in results expected.
Red blood cell count 3.82 10*12/L [3.8 - 5.8]
RDW 12.9 % [11.0 - 14.8]
Mean cell volume 88.7 fL [80.0 - 100.0]
Mean cell haemoglobin level 30.3 pg [27.0 - 32.0]
MPV 8.0 fL
Neutrophil count 2.43 10*9/L [1.7 - 7.5]
Lymphocyte count 1.40 10*9/L [1.5 - 4.5]
Below low reference limit
Monocyte count - observation 0.49 10*9/L [0.2 - 0.8]
Eosinophil count - observation 0.03 10*9/L [0.0 - 0.4]
Basophil count 0.04 10*9/L [0.0 - 0.1]

Serum ferritin level 10 ng/mL [15.0 - 300.0]
Below low reference limit
Note due to change in method from 27th Sept 2016
results are significantly lower than previous

Plasma glucose level 3.6 mmol/L [3.0 - 11.1]

Thyroid function test
Serum TSH level 0.43 mu/L [0.3 - 5.0]
Serum free T4 level 8.2 pmol/L [8.4 - 19.1]
Below low reference limit
Note change in TFT methods and ref ranges from
27th Sept 2016

Urea and electrolytes
Serum sodium level 132 mmol/L [133.0 - 146.0]
Below low reference limit
Serum potassium level 3.9 mmol/L [3.5 - 5.3]
Serum urea level 2.5 mmol/L [2.5 - 7.8]
Serum creatinine level 49 umol/L [45.0 - 104.0]


I have been told my iron is shockingly low, but this is common in Hypo, right? After the Endo saying I am NOT Hypo I have continued the NatureThroid but I don't feel much better. In fact it feels my body is either fighting or a virus or infection, because my right lymph node gland has swollen underneath the right side of my jaw. I don't know if this is linked to the NDT or not.

PLEASE help. I don't know what to take or do anymore.

Avatar universal
In my mind what you have gone through is almost criminal.  All because of the misguided protocols of the NHS with regard to hypothyroidism.  Why don't they accept that what they are doing is causing unnecessary suffering by the patients, and untreated hypothyroidism can lead to more serious ailments such as diabetes and heart problems, which will also cost the NHS a lot more money in the long run.  

How can those doctors hear your many symptoms typical of hypothyroidism and deny it?  If not your thyroid then what do they propose as possible causes, and what are they going to do to evaluate.  Doing nothing is ridiculous.  

I am very sorry you spent the money to go private, with such awful results.  At this point I think your best option is to go back to the GP who at least gave you thyroid med, and ask him to please read the paper in the link I gave you above and consider treating you clinically, as needed to relieve all those hypothyroid symptoms.   Since the GP was willing to prescribe 50 mcg of T4 previously, he might be willing to treat you clinically after reading the paper.  In addition to T4 you are likely to need T3 med also.  Maybe the doctor can give you a prescription if you are willing to pay for it.  

Also, your ferritin level is terribly low.  That can cause a lot of symptoms also, so you need to supplement with a good form of iron like ferrous fumarate, or ferrous sulfate, or ferrous bisglycinate.   I'd say about 50 mg daily for a while and then re-test.  Optimal is at least 70.  Along with the iron you should take about 500 mg of Vitamin C to help avoid stomach distress.  You should also supplement with about 2000 IU of Vitamin D daily.  Also I would add about 500 mcg of B12 daily.  Hypo patients are typically too low for all three of those.  
1 Comments
Unfortunately I have already returned to my GP and in so many words been classed as a hypochondriac. The GP will not budge. I have been given some iron that I will take three times a day as prescribed. I have also self medicated with Nature-Throid 1 grain but since taking them I have felt all round ill and my lymph nodes have come up under my right jaw. Could this just be a virus by coincidence or would the meds cause this? I do feel like my appetite has increased extremely and I&#39;m worried maybe the meds are too strong or if this isn&#39;t related at all.
Avatar universal
I think you should keep looking for a doctor that will recognize your symptoms as being hypothyroid related and agree to treat you.  You can even push them by following the advice from the UK member I quoted above.  If that doesn't work then your only alternative is self-medication.  

The NatureThroid should not cause the symptoms you mentioned.  It is not unusual for hypo patients starting on thyroid med to feel worse at the beginning.  That is because your body will react to the med by reducing the TSH level, which will reduce the output of natural thyroid hormone, so the net effect is minimal until the dosage essentially suppresses TSH.  Then further dose increases will raise the FT4 and FT3 levels.  
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