Aa
What doctor do I go to for this?!
Hello,
I've never done this before so I'll do my best. I'm 39 going to be 40 next Monday, caucasian female. When I was around 30 I started having some joint pain in my left shoulder and knees, I was with Sutter labs at the time and the provider ran an ANA which was negative, didn't think anything of it. I started not feeling well almost 8 years ago after my son was born, joint pain, severe fatigue, insomnia increased. Chalked it up to a new baby. Then I had a rapid weight loss of about 30 lbs without trying which has NEVER happened to me anyway, the fatigue and pain increased, ANA screen returned positive with speckled atypical pattern I think 1:160 suspicious for SS-A/RO. Further testing later showed thyroid antiperoxidase antibodies over 1,000, started thyroid medication which decreased the levels. Spine degeneration with large Schmorls node at L4L5 mutiple bulging discs. After my daughter was born 4 years ago, symptoms increased to include gait disturbances, 2 falls on separate occasions with transient parathesias felt in face and extremities. Next ANA indicated homogenous pattern. Permanent numbness to L leg and part of foot extending to the great toe, I'm assuming from the spine? My last doctor before this one ordered an MRI which was abnormal, "high intensity foci on T2 and FLAIR in left middle cerebellar peduncle and in the white matter adjacent to the occipital horn of the left lateral ventricle. No definite lesions are identified in the corpus callosum". Referral to neurologist who recommended a spinal tap which resulted in oligoclonal bands in CSF, "multiple restriction bands that are also present in the patient's corresponding serum sample. Unable to define whether these gammaglobulins are of systemic or intracerebral origin". SO follow up in another year for MRI you probably don't have MS, but what the heck is going on?Most ANA is negative which shocked me to the core, though I know they can change. My B12 is chronically elevated, last one was 1,544, I don't take supplements and should be considering I am a gastric bypass patient. If anyone has any ideas I am all ears. I just feel alone. My next stop is a therapist. Thanks everyone for reading this.
I've never done this before so I'll do my best. I'm 39 going to be 40 next Monday, caucasian female. When I was around 30 I started having some joint pain in my left shoulder and knees, I was with Sutter labs at the time and the provider ran an ANA which was negative, didn't think anything of it. I started not feeling well almost 8 years ago after my son was born, joint pain, severe fatigue, insomnia increased. Chalked it up to a new baby. Then I had a rapid weight loss of about 30 lbs without trying which has NEVER happened to me anyway, the fatigue and pain increased, ANA screen returned positive with speckled atypical pattern I think 1:160 suspicious for SS-A/RO. Further testing later showed thyroid antiperoxidase antibodies over 1,000, started thyroid medication which decreased the levels. Spine degeneration with large Schmorls node at L4L5 mutiple bulging discs. After my daughter was born 4 years ago, symptoms increased to include gait disturbances, 2 falls on separate occasions with transient parathesias felt in face and extremities. Next ANA indicated homogenous pattern. Permanent numbness to L leg and part of foot extending to the great toe, I'm assuming from the spine? My last doctor before this one ordered an MRI which was abnormal, "high intensity foci on T2 and FLAIR in left middle cerebellar peduncle and in the white matter adjacent to the occipital horn of the left lateral ventricle. No definite lesions are identified in the corpus callosum". Referral to neurologist who recommended a spinal tap which resulted in oligoclonal bands in CSF, "multiple restriction bands that are also present in the patient's corresponding serum sample. Unable to define whether these gammaglobulins are of systemic or intracerebral origin". SO follow up in another year for MRI you probably don't have MS, but what the heck is going on?Most ANA is negative which shocked me to the core, though I know they can change. My B12 is chronically elevated, last one was 1,544, I don't take supplements and should be considering I am a gastric bypass patient. If anyone has any ideas I am all ears. I just feel alone. My next stop is a therapist. Thanks everyone for reading this.
Levels of serum vitamin B12 may be raised in:
* Frequent consumption of foods high in vitamin B12
* Vitamin B12 supplements/injections, B complex, or multivitamins
* Polycythaemia Rubra Vera
* MTHFR gene mutation
* Functional (active) B12 deficiency+
* Leukaemia:
- Chronic myelogenous leukaemia aka chronic granulocytic leukaemia
- Acute myeloblastic leukaemia
- Acute promyelocytic leukaemia
* Hypereosinophilic syndrome
* Myelosclerosis
* Carcinomatosis
* Liver disease:
- Acute hepatitis
- Cirrhosis
- Chronic liver disease
- Hepatic coma
* Non-leukaemic leucocytosis
* Chloral Hydrate
* Lab error
+Excerpt from Chris Kresser's article: What Everyone (Especially Vegetarians) Should Know About B12 Deficiency:
"...be aware that a high serum B12 does not necessarily rule out functional/active B12 deficiency. In fact, I have come to view a high serum B12 in the absence of supplementation as a potential red flag for active B12 deficiency."
* Frequent consumption of foods high in vitamin B12
* Vitamin B12 supplements/injections, B complex, or multivitamins
* Polycythaemia Rubra Vera
* MTHFR gene mutation
* Functional (active) B12 deficiency+
* Leukaemia:
- Chronic myelogenous leukaemia aka chronic granulocytic leukaemia
- Acute myeloblastic leukaemia
- Acute promyelocytic leukaemia
* Hypereosinophilic syndrome
* Myelosclerosis
* Carcinomatosis
* Liver disease:
- Acute hepatitis
- Cirrhosis
- Chronic liver disease
- Hepatic coma
* Non-leukaemic leucocytosis
* Chloral Hydrate
* Lab error
+Excerpt from Chris Kresser's article: What Everyone (Especially Vegetarians) Should Know About B12 Deficiency:
"...be aware that a high serum B12 does not necessarily rule out functional/active B12 deficiency. In fact, I have come to view a high serum B12 in the absence of supplementation as a potential red flag for active B12 deficiency."
1 Comments
Thank you so much for your response
Occasionally, in Hashimoto's Thyroiditis, the patient may present features of hyperthyroidism
followed by hypothyroidism, however the order and duration of the sequence is irregular and very difficult to determine.
So initially the hyperthyroid phase was possibly the cause of the weight loss and then later followed by the hypothyroid state.
Once a person is diagnosed with one autoimmune disease ( Hashimoto's) the likelihood of the onset of additional autoimmune diseases (regardless of diagnosis or lack of- due to complexities in A/I diagnostics) is greater.
In addition, you may have other co-factors, such as gastric bypass surgery, which may contribute further to your multiple issues.
Malnutrition is very suspect, with multiple deficiencies and imbalances.
Your B12 is pooling, meaning it is NOT getting processed into a bioactive form.
Lack of Intrinsic factor, a substance which helps the body process and absorb B12. is usually the reason.
The underlying reason for low IF is low gastric acid levels.
Supplementing with B12 Methyolcobalmin (bioactive B12))is the probably the simplest fast solution.
You may also have systemic calcium leaching from bones and joints, which should be investigated.
Vitamin D. Methylfolate, iron, iodine, magnesium (RBC test for electrolytes), gastric acid levels,
methylation (MMA test for methylocobalamin and methylfolate) and thyroid function tests (FT3, FT4 AND reverse T3, not just TPO)
Beware of the conventional medical system.
-The effectiveness of the diagnostic and therapeutic work in your case so far has been less than desirable.
-Your case is too complex and it may involve too many specialists (who rarely converge)
-Your gastric bypass may have added more issues than it solved (and not too many conventional doctors will touch upon this subject -it's like code between them)
My opinion is that you should see a reputable Functional Medicine Doctor to sort all this out.
The above comments are not intended to replace professional medical advice.
Best wishes,
Niko
followed by hypothyroidism, however the order and duration of the sequence is irregular and very difficult to determine.
So initially the hyperthyroid phase was possibly the cause of the weight loss and then later followed by the hypothyroid state.
Once a person is diagnosed with one autoimmune disease ( Hashimoto's) the likelihood of the onset of additional autoimmune diseases (regardless of diagnosis or lack of- due to complexities in A/I diagnostics) is greater.
In addition, you may have other co-factors, such as gastric bypass surgery, which may contribute further to your multiple issues.
Malnutrition is very suspect, with multiple deficiencies and imbalances.
Your B12 is pooling, meaning it is NOT getting processed into a bioactive form.
Lack of Intrinsic factor, a substance which helps the body process and absorb B12. is usually the reason.
The underlying reason for low IF is low gastric acid levels.
Supplementing with B12 Methyolcobalmin (bioactive B12))is the probably the simplest fast solution.
You may also have systemic calcium leaching from bones and joints, which should be investigated.
Vitamin D. Methylfolate, iron, iodine, magnesium (RBC test for electrolytes), gastric acid levels,
methylation (MMA test for methylocobalamin and methylfolate) and thyroid function tests (FT3, FT4 AND reverse T3, not just TPO)
Beware of the conventional medical system.
-The effectiveness of the diagnostic and therapeutic work in your case so far has been less than desirable.
-Your case is too complex and it may involve too many specialists (who rarely converge)
-Your gastric bypass may have added more issues than it solved (and not too many conventional doctors will touch upon this subject -it's like code between them)
My opinion is that you should see a reputable Functional Medicine Doctor to sort all this out.
The above comments are not intended to replace professional medical advice.
Best wishes,
Niko
2 Comments
Hi Niko, thank you for your response, I actually had a subsequent ANA that shows I still have elevated thyroid peroxidase antibodies though very low now at 266. I have also developed a nucleolar pattern 1: 1240 (?) along with the speckled 1:80 which is barely positive. I have a great neurologist who at be very least will evaluate my neuromuscular symptoms and has referred me out to rheum. And my B12 came down to 666. I absolutely agree that this is too complex to have so many cooks in the kitchen, I will request a referral to a FMMD, we have integrative MDs I think it’s similar. Thanks
My neuro checked all of the tests you mentioned above and found everything to be normal, including urine electrophoresis , only one missing is reverse T3, I’ll ask my FMD to add it on
Sorry guys the last ANA was negative. Oh and yeah my memory sucks, can't think of words sometimes that I use every day and have started to stutter at the beginning saying some words so that I have to slow down significantly to get the words out.
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